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Revisions to Declaration of Helsinki (2024)

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Revisions to Declaration of Helsinki (2024)

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Declaration of Helsinki Revision: Modern Ethics for Medical Research

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This JAMA issue focuses on important contemporary issues in ethics and medical research and is anchored by 2 Special Communications with their accompanying Viewpoints and Editorials.

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‘Do no harm’? Rethinking risk and harm narratives in abuse-focused research with children

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‘Do no harm’? Rethinking risk and harm narratives in abuse-focused research with children

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Helen Beckett and Camille Warrington - excellent paper on ethical decision making in sensitive research with children and young people.

"....highlight some of the current shortcomings in how risk of harm in research is understood and assessed, in relation to ethical decision-making around abuse-focused research with children, and to articulate the dangers of the risk exclusionary practices that can ensue. We, like others working in related fields, emphasise the need for broader adoption of a more holistic, nuanced and dynamic approach to assessing and managing risk of harm. Such an approach considers risks of inclusion alongside risks of exclusion, including risks of replicating existing structural marginalisation and harm..."

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UCLan - University of Central Lancashire

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Despite increasing recognition of children’s right to have a say about matters that affect them (Article 12, United Nations Convention on the Rights of the Child), this right is often denied in the context of child abuse research. This article explores the ways in which ethical decision-making can contribute to the denial of this right and the negative implications of this at both an individual and societal level. Ethical decision-making that stymies the conduct of abuse-focused research with children is usually justified with reference to protecting participants from risk of harm. Whilst in no way suggesting that this is not a critical consideration, the authors question the simplistic and deterministic ways in which this can be understood within ethical decision-making, and the unnecessarily risk-averse decisions that can ensue. Sharing examples from their cumulative 30 years’ experience of engaging children and young people in abuse-focused research, the authors stress the need for a more holistic, nuanced and dynamic approach to assessing and managing risk of harm. This would consider risks of both inclusion and exclusion. Understanding that risk and harm are neither static nor universally experienced concepts, it would recognise the implausibility of the ‘do no harm’ guarantees often expected of social researchers. Instead, informed by rights-respecting and trauma-informed perspectives, it would focus on holistically promoting participant wellbeing in, and through, research. Key to this is permitting, and supporting, researchers to exercise contextually-informed, collaborative decision-making in the field; something the authors share their emerging practice framework for.

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Rights for those under 18 re payment - general not specifically focussed on involvement

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Rights for those under 18 re payment - general not specifically focussed on involvement

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You'll usually have more rights at work than an adult and you might not have to work as many hours.

It's a good idea to check your school leaving age on GOV.UK because your rights depend on whether you've reached this age.

If you're too young to leave school, check your employment rights and working hours on GOV.UK.

If you've left school, or you stayed at school after you could have left, your rights are different.

Check the number of hours you should work

You shouldn't usually be asked to work more than 40 hours a week or 8 hours a day.

Your employer is allowed to ask you to work for longer in exceptional circumstances. They can only ask this if:

no one who's 18 or over is available to do the work

they need you because it's suddenly busy or to keep the service running

your education or training won't be affected by the work

This might be, for example, if you work in a care home and there's extra work because several residents are ill. If the adults who'd normally cover a shift are also ill, you can be asked to work.

You'll probably still be in education or training if you're under 18 and don't have the equivalent of 2 A-levels. Your employer shouldn't expect you to work when you're supposed to be learning, for example when you're:

at college or school, full time or part time

studying as part of your apprenticeship or traineeship

Check what times of day you can work

In most jobs, you can't normally be asked to work between 10pm and 6am. If your contract says you have to work until 11pm, that's alright but you shouldn't start work before 7am the next morning.

You can be asked to work at other times in exceptional circumstances. This might be, for example, if there's been a flood and you have to help to clear up.

If you work in some jobs, your employer can ask you to work at night if all the following apply:

no one 18 or over is available to do the work

it's suddenly busy or you're needed to keep the service running

your education or training won't be affected by the work

you're supervised by an adult - if it's necessary for your safety

you're given time to rest to make up for it - find out more about compensatory rest on GOV.UK

The hours you can be asked to work depend on the job:

Example

Mo works in a hospital and is asked to work until midnight because the adult who usually covers that shift is on holiday. There are more patients than usual at the moment so the department's very busy. Mo is allowed to do this work because there's no adult available and there's more work than normal.

Check what breaks and time off between days you should have

You're allowed a 30-minute break if you work 4 and a half hours or more in a shift - you and your employer can decide when you have it. You might not be paid for your break - check with your employer.

You should have 48 hours off in one go each week.

You must have at least 12 hours off between each working day - unless your working day is split into short periods of work.

Example

Holly works in a cafe from 8-11am every morning and 5-9pm every night. She doesn't need 12 hours off overnight because she had a break in the afternoon.

Your employer can ask you to have shorter breaks or less than 12 hours off between days if:

no one 18 or over is available to do the work

it's temporary

the work needs doing straight away and can't wait

something unexpected has happened

you're given time to rest to make up for it - find out more about compensatory rest on GOV.UK

For example, your employer could ask you to shorten your break if you work in a restaurant and a coach party arrives. Other colleagues have called in sick and there's no one else to do the work.

Check what work you can do

You shouldn't be asked to do work that:

you're not physically and mentally able to do

is a risk to your health because of extreme cold, heat or vibration - for example by working with a drill or in a freezer

If you work somewhere that sells alcohol

Check your local council's rules on whether you can serve alcohol. Normally you're allowed to if you work in a bar or restaurant, but some councils say you can only serve people with drinks in cans or bottles.

You can find your local council on GOV.UK.

If you're asked to work with chemicals

You can't do work where you might be in contact with chemicals, toxic material or radiation unless:

it's part of your training

you're supervised by an experienced person

your employer keeps you as safe as possible

Check what pay and time off you can get

You're allowed the same amount of paid holiday as adults - check how much you should get.

To make sure you're being paid the right amount, check the minimum wage for your age on GOV.UK. You should get this even if you're working for someone you know, for example as a babysitter.

If your employer's treating you unfairly

If you're being asked to work for too long or when you shouldn't be, you can get help from Acas. They're a government-funded body whose job is to help with workplace disputes. They'll help you decide what to do, for example making a complaint to the Health and Safety Executive or your local council.

For other situations, you can talk to your employer to try to solve the problem.

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Check your rights at work if you're under 18

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Young people's rights to working hours, rest breaks, pay, and holiday. Find out what types of work 16 and 17 year olds can do.

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NIHR guidance on payment for involvement (includes children and young people)

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NIHR guidance on payment for involvement (includes children and young people)

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This guidance has been compiled for a wide audience, but in particular it will be of value to:

researchers who need to cost public involvement activities at any stage of the research process

anyone in a professional role involved in costing public involvement, advising researchers on budgeting for involvement or who has an interest in the topic

public contributors who want to know how their involvement in research is costed

research advisors/ managers who provide guidance to the research community about involvement

commissioners of research who invite funding applications from the research community
reviewers and panel members who appraise research projects with costed involvement activities

NIHR has developed a separate guidance document aimed at public contributors, which you might also want to view.

Good practice for payment and recognition - things to consider

Before you start:

develop a clear policy on payment, expenses and recognition prior to involvement

where possible you should involve the public contributors you'll be working with in the budgeting process

at the outset, offer clear information for members of the public explaining what they are being offered, how they will be paid, how their involvement will be acknowledged, and what actions they need to take

seek to ensure that members of the public are not financially worse off as a result of losing benefits through being involved in your research

seek advice from your organisation's or institution's finance and human resources (HR) departments to ensure that your policy can be implemented

do not underestimate your budget for involvement - ensure that you have sufficient resources to coordinate and support involvement throughout your research, and that you can cover all necessary costs

offer payment at a level that is commensurate with the nature and demands of the activity and is fair when compared to other members of the research team, to acknowledge the value placed on public involvement

consult with members of the public about how they would like to receive payment or acknowledgement for their contributions

Throughout the involvement:

where possible, be flexible when offering payment and recognition as individual's circumstances should be taken into account and may change

where possible, pay for expenses in advance to avoid members of the public having to wait for reimbursement
reimbursement of expenses should be processed promptly

offer support to members of the public in the form of documentary evidence of any payment for involvement or expenses, so that they have information to provide to tax or benefits authorities

Other forms of recognition:

thank members of the public for their contributions, whatever method of payment and recognition you decide upon
keep those actively involved updated about the progress of your research, including feedback on how their contributions have made a difference

offer appropriate learning and development opportunities to support and recognise the value of the contributions made by members of the public, with certificates to record what learning may have been achieved or sessions attended
acknowledge the contribution of members of the public to your research in internal and external reports, publications, posters and presentations

offer information about other opportunities for involvement and/or participation in research
celebrate successes with those who have contributed to the research

When you are involving children and young people there are other things to consider. Look at our specific guidance on involving children and young people and specific payment guidance below.

Developing a payment policy

It is good practice to have a clear policy on payment and recognition in place prior to involvement, so that members of the public know in advance what is being offered and are able to make an informed decision about getting involved. However, policies do not need to be long or complex documents. They should explain, in plain English, what those involved should expect before, during and after their involvement, and the processes for claiming payment and expenses during that period.

A good payment and recognition policy:

Is based on guidance from all key persons

is developed with the involvement and agreement of organisational finance and/or HR departments to ensure it can be fully implemented

is developed with the involvement of members of the public

is developed with the advice of an expert welfare benefits adviser on the multiple benefit conditions that must be followed by members of the public who are in receipt of state benefits

includes measures to alleviate potential benefit barriers and to prevent misunderstandings with Jobcentre that may lead to benefits being stopped

is written in clear language (take a look at the Plain English summaries guidance), and is available in a range of formats if required

Sets out payment rates to be offered and options for asking for a lower amount or declining payment

provides a clear written information about the nature of the involvement, the amount offered, the duration and frequency of involvement and which expenses will be covered

offers a clear explanation of what payment rates members of the public should expect to be offered for each activity - to do this it might be helpful to 'categorise' your involvement activities and allocate payment rates to these

offers members of the public the option of asking for payment at a lower amount or declining a payment and offering to volunteer

states if 'Pay As You Earn' PAYE is to be used and person asked to complete the HMRC form to obtain a tax code

states where a person who is registered self-employed will be responsible for their own tax

Sets out which expenses may be reimbursed or covered

Explains the process of claiming payments and expenses

clearly explains the procedures for claiming payment and/or expenses reimbursements, including any cut-off dates for organisational systems, and the likely timing of when payment will be received

Sets out procedures specifically for members of the public who receive benefits

provides reliable information on the different benefit conditions and payment limits or disregards or provides access to Welfare Rights Advice

provides an example official letter from the organisation to prevent misunderstandings with Jobcentre Plus staff that

explains how involvement is different to employment and about support for mobility or care needs

allows members of the public who receive state benefits sufficient time to obtain reliable advice on their benefit conditions and to consider what level of involvement and payment they can accept, and sufficient time to follow required Jobcentre Plus procedures

Policy implementation and review

Budgeting for involvement

Getting started with budgeting

Step-by-step process to get started with budgeting for involvement

This step-by-step process is a recommended approach to budgeting. We do understand that often in involvement things change and evolve, for example when co-producing a research project. Therefore, you might consider some flexibility to account for changes in costs as the research project progresses. You might also want to consider involving the public contributors you'll be working with in this process of setting out your budget for involvement.

Step 1: Framework selection
Select a framework for mapping involvement costs. This might be the research project cycle or a project timeline.

Step 2: Planning your involvement
Make a plan of the involvement activities you intend to incorporate into your research.

Step 3: What are the costs?
For each activity, identify the specific costs that you will need to budget for.

Step 4: How much will it cost?
Estimate the cost or range of costs against each involvement activity.

Step 5: Mapping
Map the involvement activities onto your selected project framework so that you know exactly when in the project timeline costs are allocated.

More information about how to implement this step-by-step process can be found below where we talk about working out the involvement costs for your study.

Try to ensure that all members of the public involved in research studies are well supported. Within small projects this will usually be the responsibility of the chief investigator, which will have implications for the researcher's time and may need to be costed at the outset of the project.

Remember the importance of paying expenses for members of the public in advance or ensure that they are paid promptly after their involvement in an event or activity - they should not be out of pocket for contributing to your research.

Involvement is not participation

Taking part in a research study as a participant does not constitute public involvement. In the NIHR Briefing Notes for Researchers you will find NIHR's definitions of involvement, engagement and participation. It is important not to mix up the costs for activities that are part of a study protocol, such as a focus group attended by study participants, with the costs of actively involving the public in a research study. This resource does not deal with how to budget for participation costs and this would need to be done separately.

Do not under budget

Do not under budget for involvement when applying for research funding. Reviewers will check whether the costs reflect the reality of effective public involvement or the support/training you are planning. They will also look for value for money. While some people may end up choosing not to accept payment for involvement activities, budgeting should be done on the basis that they will. There may be other ways of recognising someone's contribution, for example by paying for them to attend a conference or a training course.

Involvement costs before a study is funded

If you want to cover involvement costs in advance of obtaining research funding, you will need to find specific pre-funding sources of support. Most of the NIHR Research Design Services (RDS) offer a bursary scheme which allows researchers to apply for a small amount of money from their local RDS to pay for public involvement in a study before an application for funding is made. Alternatively you might want to check whether your institution or organisation provides such funding.

What do you need to budget for?

In this section we provide a list of the common costs associated with active involvement in research. You should cost for the involvement relevant to your study, ensuring the costs are matched to what you plan to do and show value for money. For each item, we explain why this cost might be incurred and, where possible, give some examples. Depending on your plans for involvement, there may be other costs not listed here that you need to account for.

For any costs you should check if your institution/organisation has standard rates, for example for mileage, or has an existing supplier you can use to help you to calculate the estimated costs.

Payment and reward

You will need to decide how you will reward members of the public getting involved in your research. You might want to offer an honorarium payment, to each person every time they make a contribution, for example for taking part in a project advisory group meeting. Or you may want to give a non-monetary reward, such as a training course or conference that is not part of the costed involvement activity.

Payments to individuals

These are payments to members of the public in recognition of time, skills and expertise. The rate you offer will depend on a number of factors as each situation is different. For example, one-off consultations are likely to have lower rates than ongoing involvement through project groups and undertaking the research. It may be helpful to ask yourself the following questions when deciding what rate best suits the situation:

For a guide to NIHR payment rates, which can be used as a guide to set your payment rates, see section below 'Payment rates'.

Get to know your organisation's process for paying fees and expenses to members of the public as part of planning your project and aim to have a system in place to pay people and reimburse their expenses before involvement starts. Include a copy of or make reference to your organisation's payments and expenses policy within the research grant application. It is good practice to offer payment whenever possible to members of the public you involve in your research. However, receiving payment can have implications for people receiving any form of benefit. It is very important that people receiving state benefits get expert advice prior to accepting payment. Find out more about how payment might impact welfare benefits in the section below 'Welfare benefits'.

Vouchers or tokens for individuals

Proxy payment such as vouchers can be offered as a reward and recognition for involvement, especially for one-off events or consultations. Such rewards are usually offered to children and young people under 16 years who are not in receipt of benefits instead of cash payments. Where people are in receipt of benefits, high street or gift vouchers may be treated as earnings, and viewed by the benefits authorities in the same way as other forms of payment; for more information on how vouchers may impact individuals on welfare benefits, please see the appropriate paragraph on the section below 'Welfare benefits'.

One-off payments

Payments for one-off involvement are now treated the same as any other payment. For those on welfare benefits, these payments are subject to the same restrictions as payments for longer term involvement. Previous regulations that may have meant one-off payments could be ignored for tax and benefit purposes are no longer applicable.

Fee, donation or gift to a group or network

If you are working with a patient or service user group, you may want to pay a fee, make a donation or purchase a gift for the group. A fee or donation gives the group control over how they use the money for their own interests. It's important to pay the fee directly to the group as payment through an individual may affect their eligibility for welfare benefits or have different tax implications.

Funding for additional training and learning

Another reward for members of the public is to pay for the costs of training and other learning opportunities. These courses may be offered through your university or NHS Trust.

Honorary appointment

Giving people an honorary status, such as lay fellow or research partner, at the university or NHS Trust is often used as a way to reward and recognise their contributions. They can then have access to facilities such as the library, seminar series and other research opportunities. There may not be any costs attached to this but it may involve a Disclosure and Barring Service check.

Expenses for members of the public

In addition to offering payment for involvement, out of pocket expenses should also be offered to ensure that individuals do not end up financially worse off for providing what is, in effect, a gift of their own lived experience. Ideally, expenses should be covered in advance; for example, by booking accommodation or providing train tickets. For some people receiving welfare benefits it may be essential to pay upfront for expenses in advance. Where expenses are reimbursed after the event, this needs to be done promptly. This is very important to people on low incomes. The exact nature and rates of reimbursement will be in accordance with the rules and procedures of the commissioning organisation.

Travel

It is important to cover the cost of travel for any involvement. The costs usually covered include standard class rail fare, reimbursed bus fares or mileage. However, it is important to remember that some people may need alternative travel, for example a taxi, due to their support requirements. Booking rail tickets in advance and travelling at off-peak times can reduce costs.

Most organisations will have their own rates for reimbursing mileage when people use their own car. Alternatively, Her Majesty's Revenue and Customs (HMRC) provide guidance on mileage costs.

It is important to consider how many journeys will be needed for each person over the course of the project. Recruiting public contributors from a wide geographical area may be necessary for a national study or a study of a rare condition. This can greatly increase travel costs and add substantially to the overall involvement budget. You might want to consider a hybrid model whereby you combine face-to-face meetings with remote working.

Remote/ home working costs

Some public contributors will make use of home office supplies as part of their involvement. This might include use of a telephone or internet connection to join meetings remotely, and / or it might include printing out papers at home that have been sent via email. Where public contributors participate in meetings remotely from their home, NIHR provides for a standing allowance of £5 per meeting to cover the cost of telephone calls, paper, printing ink and paper, internet connection and other home sundries.

Subsistence

Subsistence costs are for time spent away from home and the costs that need to be met because of this, for example paying for meals, snacks and refreshments. Check if your organisation/institution has a maximum amount that can be covered. HMRC advises benchmark rates of £5 for one meal/five hours away from home and £10 for two meals/10 hours away from home.

When people are in receipt of benefits you must reimburse the exact amount, not a rounded up figure, as rounded up amounts are treated as earnings.

Childcare

Some people may need support for childcare to get involved. People may have their own arrangements in place and charges will vary. There is guidance you can review for average childcare costs.

Carer costs

People who have a caring role may need a replacement carer to enable them to get involved with research. They may have their own arrangements in place and costs will vary. There is guidance you can review for carer costs.

Personal assistants

Some disabled people have a personal assistant to support them to get actively involved in research. Some people use the term support worker. The cost of personal assistants is highly variable and depends on local circumstances. People who have personal assistants will often have their own arrangements regarding the activities undertaken and the cost of these. Organising a personal assistant through an agency might cost you around National Living Wage which is £9.50 per hour for adults over 23 years of age. If the personal assistant is staying overnight, there may be a reduced hourly rate for that time.

Overnight accommodation

If members of the public are travelling some distance or taking part in an involvement activity such as training over several days, they may need overnight accommodation. Affordable accommodation can be sourced from city and regional tourist information centres and directly from hotels.

Involvement activity

Finding people

Recruiting members of the public to get involved with research studies can be a key involvement activity cost. At the outset of the study it is important to think about who will be responsible for this activity and how much time the recruitment process will take. It is also important to think about where people will be recruited from and the cost of working with partners in the recruitment process such as charities, patient groups or local service commissioning organisations.

In order to recruit members of the public to get involved with a research study you may want to advertise the opportunity in local or national newspapers, on local or national radio, at conferences and in relevant newsletters. Advertising costs will vary depending on the medium but a small advertisement in a local newspaper may start at around £200. These costs can be reduced by using free advertising channels such as e-communities and networks.

People in Research is managed by NIHR and offers a free place to advertise involvement in research opportunities.

Training and learning costs

Training and induction for members of the public may be required for many involvement activities. They will need to have adequate preparation for their role and also be supported to carry it out well. This support may range from an induction process through to in-depth training, for example in interview techniques. It's also important to think about the training and learning needs of the research team - are they ready for involvement? It may help to find out about existing training and learning resources.

Venues and catering

Equipment and books

It may be necessary to provide equipment or books for members of the public getting involved. This will be important when they have a particular role such as peer interviewing and will need audio recording equipment. It might also be cost effective to provide technology such as a tablet computer for teleconferencing instead of holding face-to-face meetings, especially if long distances are involved. Check if your organisation/institution has a purchasing agreement with a particular supplier to help you budget for this.

Access to university/NHS Trust facilities

Members of the public may require access to university/NHS Trust libraries, IT services, access to research relevant to the topic they're engaged with and so on. There may not be a cost for such access but you may need to account for staff time in setting up the arrangement.

Conferences fees

Involved members of the public may need to attend conferences and events. This might be as a networking activity to recruit further members of the public into a study, to listen to the presentation of research related to the study or to present research findings once the study has ended and results are known. Involvement costs for these activities may include travel and hotel costs, conference fees and presentation skills training. Conference fees are usually upwards of around £200. It is always a good idea to check if bursaries are available from the conference organisers for members of the public to attend.

Involvement staffing

You may decide that dedicated staff time to facilitate and/or support involvement is required for your study. If you are involving members of the public as peer interviewers or co-researchers, it is good practice for them to be employed on the same terms and conditions as other research assistants. However, the situation is different if a person is receiving welfare benefits; it is likely they will not be able to accept similar terms and conditions or be employed. These individuals must seek advice before taking up similar positions. You can find out more about how involvement payments can affect individuals in receipt of welfare benefits in the relevant section below.

Other staff support that may be required can range from some extra administrative support through to a dedicated involvement coordinator or community engagement lead as part of the team. To help you decide what staffing is required to support the involvement consider the following questions:

You'll need to take the same approach in working out the costs of staffing for involvement as you do when working out other staffing costs and follow your own organisational recruitment procedures.

Administrative support

It is likely that you will need some dedicated administrative support to process payments/ rewards and expense claims for members of the public. The administrator may also help with organising involvement events if required.

Public involvement coordinator and/or community engagement lead

Depending on the duration and scope of the research study and experience of the research team, you may decide to employ a public involvement coordinator. Their role could include liaising with and supporting members of the public during the study, organising meetings and focus groups, engaging with specific communities or being a bridge between researchers and members of the public.

Independent facilitator

An independent facilitator or other person with expertise in engaging with patients and the public might be useful if they have very specific skills which are not available within the research team, for example running a focus group or a meeting with very young children or with participants with specific disabilities or impairments such as hearing loss or communication problems. Rates for facilitators will vary depending on the specific skills required and can be upwards of around £400 per day.

Peer researchers/interviewers

There are different models of involving peer interviewers or co-applicants in studies. Sometimes this is done on a sessional basis with peer interviewers being paid for each interview carried out. In other cases, peer interviewers are employed on full- or part-time contracts with the host organisation. If you decide to employ peer interviewers, it is important that such posts are graded appropriately by the employing institution's HR department. The model which best suits you will probably depend upon the duration of involvement and the tasks involved. Please see sections below on payment rates and information for individuals who are in receipt of welfare benefits.

Other costs

You might need to consider specific support for individuals with hearing, mobility or visual impairments. Communication support for people with hearing impairments includes using microphones, hearing/induction loops, talk-to-type conversion (sometimes called palantype), speech-to-text reporters and sign language interpreters. Hearing/ induction loops are often integrated into venues but you will need to use a personal address system and microphones. Making sure venues used for involvement events are accessible is vital when involving people with mobility impairments. You may also need to consider the hire of equipment such as walking aids, wheelchairs or mobility scooters.

Disclosure and Barring Service

Depending upon the role members of the public have in your research, they may require a Disclosure and Barring Service (DBS) check, for example involvement activities requiring members of the public to take part in peer interviews in a healthcare setting or having direct contact with young people and children. A basic DBS check costs £18 (as of 1 April 2022).

Language translation and interpretation

It might be necessary to translate some of the study materials, such as focus group topic guides, research protocols and research findings, in order to involve members of the public whose first language is not English. Taking part in focus groups might also involve the services of an interpreter. Many universities and NHS trusts have their own translation and interpretation policy and access to translation and interpretation providers. For example, you can find out more about The Big Word translation service.

Working out the costs for your study

Step 1: Framework selection

Using diagrams and timelines to help you think about and plan for involvement activities is a helpful method for deciding where in the research project involvement activities are likely to occur. A diagram of the research cycle and a table illustrating a project timeline are reproduced here to help you get started.

Example project timeline

Step 2: Planning your involvement

Before you can budget for involvement, you need to know how you will be involving the public in your research. We are not going to be prescriptive about that here, as the involvement and how you plan to carry it out will depend upon the research and why you are involving the public. However, for ideas of involvement activities to plan for see the NIHR Briefing Notes for Researchers.

Involving members of the public in your research will take additional time and this needs to be allowed for. Extra time should be built in for regular review of progress and to identify and alleviate pressure points during the project.

Step 3: What are the costs?

Refer to the section titled 'What do you need to budget for?' of this guidance to identify which costs you will need to account for. In that section we provide a list of the common costs associated with active involvement in research. For each item, we explain why this cost might be incurred and, where possible, give some examples. You may not need to budget for every item in the list as you will only need those items relevant to your involvement plans. Depending on your plans for involvement, there may be other costs not listed here that you need to account for.

Step 4: How much will it cost?

The actual costs of involvement need to be worked out for each individual study and using the estimated costs relevant to the locality or organisation. It is important to show value for money when applying for research funding.

Step 5: Mapping the involvement onto the project framework

Once you have estimated all the costs, it's a good idea to map the involvement activities onto your selected project framework so that you know exactly when the costs will be incurred.

Payment rates

It is important that members of the public who are asked to become involved in this work are offered payment for their involvement, and are informed of the rates being offered before they agree to undertake the work. The rate of payment that you make is at your discretion, but there may be rates suggested by your organisation or institution. There are no nationally recommended rates of payment and the amounts that public contributors are paid for involvement varies widely, dependent on activity and organisational finances/budget constraints.

In 2009, the NIHR agreed payment and reimbursement rates for involvement with the Department of Health, setting out parameters within which payment should be offered for involvement in committees or as a peer reviewer.

The NIHR Centre for Engagement and Dissemination's payment policy sets out the following rates for honorarium payments, which can be used as a guide/ benchmark:

£12.50
For involvement in a task or activity such as reading and commenting on an abstract which equates to less than half an hour. For example, reviewing papers for the development of Alerts.

£25
For involvement in a task or activity requiring little or no preparation and which equates to approximately one hour of activity or less. For example, participating in a focus group to provide feedback on a proposal.

£50
For involvement in a task or activity likely to require some preparation and which equates to approximately two hours of activity. For example, a teleconference with related papers to read or review a few short documents.

£75
For involvement in a task or activity where preparation is required and which equates to approximately half a day's activity. For example, participating in a meeting to interview a small number of candidates who have applied to join a committee or panel, participating in a focus group, or delivering training.

£150
For involvement in all-day meetings. For example, attending a committee or panel meeting as an observer prior to becoming an active public member of a committee/panel.

£300
For involvement in all-day meetings that require substantial preparation. For example, when chairing or co-chairing a meeting or when carrying out other discretionary work, which requires additional responsibilities.

Attending training courses and conferences

Payments may also be offered by Programmes for attending training courses and conferences. For attending a full day of training or event organised by NIHR programmes a payment rate of £150.00 may be offered. For attending other relevant training courses / conferences, agreed in advance between the NIHR programme and the individual, the following should be covered:

paying the fee for the course / event

paying out of pocket expenses

In addition, a nominal payment for attending the event may be offered.

Risks to benefits of recommended payment rates

Payment systems

Payment systems for public involvement in research studies are not always straightforward and can vary. In practice, the way that you make payments for involvement will depend on local organisational/ institutional circumstances. Some organisations will use petty cash for making payments, while others require invoices or pay through payroll. Payment method will also depend on the employment status of public contributors (See section below 'Tax and employment status).

However, administration issues and complex systems can sometimes result in individuals waiting for payment. Begin talking with your finance department as early as possible to find out about the payment systems in place in your organisation. Your organisation might also have a public involvement and engagement team; you might wish to contact them for advice. It is worth considering that other parts of your organisation might not know what public involvement is, or how it differs from research participation. In the NIHR Briefing Notes for Researchers you will find NIHR's definitions of involvement, engagement and participation, and other useful content which might help you through these conversations.

Regardless of the payment method, you should explain to public contributors the procedures for claiming payment, including any cut-off dates for organisational systems, and the likely timing of when payment will be received. You can ask your finance department for timelines of payment.

Welfare benefits

It is important to be aware that benefits can be affected if payment for involvement is made. There are strict limits on the amount of money that people receiving welfare benefits can earn. Where people are receiving state benefits they are required to notify Jobcentre Plus of any paid or voluntary activity. They may also need permission to undertake any paid activity. Benefit conditions are complex and limits on payments that can be received without benefits being affected vary widely and can differ for each person, sometimes from year to year. It is advisable in all cases to seek advice from an appropriate source. You can find more information on the Benefits Advice Service below.

This section was last updated in April 2022. With thanks to Judy Scott, independent consultant, for her continued expert guidance on the effects of welfare benefits regulations on payment for involvement. To the best of our knowledge, the information contained herein is accurate and reliable at the date of publication; however, we do not assume any liability for the accuracy and completeness of the below information.

Procedures for the recruitment of people for involvement who are in receipt of state benefits

Where people who are in receipt of state benefits are amongst members of the public who are being recruited for involvement you will need to ensure that staff provide appropriate information and support as follows:

1. as appropriate, ensure the person has identified the benefits they receive - they are likely to be in receipt of more than one benefit type

2. ensure person is given reliable guidance which is up-to-date on the relevant benefit conditions that apply to them and on their earning limits and disregards, and on guidance on liaising with Jobcentre Plus - this can be in the form of leaflets commissioned from a Welfare Rights Advisor or by the use of the Benefits Advice Line service provided by Bedford Citizens Advice through a subscription from NIHR

3. the Payment guide for members of the public contains a brief summary of the different benefit conditions that may apply

4. provide an offer of involvement, describe involvement activity, pay rates, duration of events, frequency of involvement events

5. explain that the person can ask to be paid less where their benefit limits are below the amount offered, or choose to volunteer instead

6. allow time for the person to consider their decision

7. agree next steps. Provide the official letter from your organisation that explains why involvement is different to employment and about support for mobility or care needs

8. allow time for a person to obtain permission for paid involvement or notify paid involvement and take or post the official letter from your organisation to the relevant Department for Work and Pensions or Jobcentre Plus office

9. as and when all liaison with Jobcentre Plus is completed, to fill in the HMRC form 'Starter Checklist' so that a tax code can be obtained

Updates on welfare benefits regulations

In brief - information for staff who are administering payments and key issues for payments to people who receive benefits

People who receive Employment and Support Allowance: Permitted work and completion of PW1 forms

There are strict weekly earning limits. A person paid £1 more than the weekly limit of £152 will have their benefits stopped. People who receive Employment and Support Allowance are required to notify their intention to start paid involvement before it commences. Paid work or paid involvement is called 'Permitted Work'. A form (PW1) is now provided online and must be downloaded, completed and sent back before involvement starts. NIHR strongly advises individuals to contact the Benefits Advice Service before starting to complete the PW1 form.

The organisation asking for a person's involvement should provide an official letter addressed to the Jobcentre that explains:

The letter is for the person to give to the Jobcentre when they notify their plans.

The official letter for Jobcentre Plus may be adapted for these purposes.

People who receive 'New style Employment and Support Allowance' together with Universal Credit for housing costs

People who qualify for 'New Style ESA must claim Universal Credit for their housing costs. All of the benefit rules and earning limits apply as described above for Employment and Support Allowance. However there is now a catch. Earnings up to full amount allowed for ESA of £152 week, will reduce the Universal Credit monthly payment for the costs of the rent. The Universal Credit monthly work allowance of £344 is the amount that can be received before Universal Credit is reduced by 55 pence for every £1 over the work allowance.

ALERT FOR STAFF IF A PERSON RECEIVES A MORTGAGE INTEREST LOAN - Payments for mortgage interest loan will be stopped for 9 months if the person is paid any money at all.

People who are about to transfer to Universal Credit from Employment and Support Allowance

People who receive Employment and Support Allowance who have permission for Permitted Work earnings of £152 a week should reduce their earnings to £140 a week BEFORE they are transferred to Universal Credit. They should notify the Jobcentre of the reduction in order to prevent loss of additional rates in Universal Credit.

Universal Credit

Universal Credit has been introduced to eventually replace a number of benefits, including Income Support, income-related Employment and Support Allowance, Income-based Jobseeker's Allowance, Housing Benefit, Child and Working Tax Credits. People who receive Universal Credit will have signed a contract with the Jobcentre to commit to requirements such as job search, training, work experience and to take a job if this is offered. They must prioritise this contract.

Prior permission for earning is not required. People are required to report net earnings before the end of the benefit month in an online journal provided by the Jobcentre.

Where they receive Universal Credit because of limited capacity for work they should:

state in the journal that they are doing 'service user involvement' and

about support for mobility or care needs

provide or post the official letter addressed to the Jobcentre provided by the organisation that explains:

that people are recruited because of their experience of using health or social care services

involvement is about consultation and cannot be used to assess capacity to work

support measures for mobility and care needs will be provided as required

People who receive Carer's Allowance

Earnings of up to a limit of £132 a week do not affect Carer's Allowance. Earnings must be reported to the Carers Allowance Unit as soon as possible. Prior permission is not required. However, people who also receive a carer's premium will have this reduced for every £1 earned over £20 a week. Where people receive Housing Benefit this will be reduced (after the carers premium) by 65 pence for every £1 earned over £20 a week.

People who receive Jobseeker's Allowance

Earnings of up to £20 a week do not affect Jobseeker's Allowance if it is received together with Disability Living Allowance or Personal Independence Payment, or the recipient is a lone parent. However, if Disability Living Allowance or Personal Independence Payment are not also received, earnings of only £5 a week are disregarded. Earnings over the disregarded amount will result in Jobseeker's Allowance being reduced £1 for every additional £1 earned. Prior permission must be obtained from the Work Coach before service user involvement starts. Where people have continued health problems it is advisable to take an official letter from the organisation to the Jobcentre or Work Programme Provider. The letter should explain that:

involvement is about consultation and cannot be used to assess capacity for work

support measures for mobility and care needs will be provided as required.

Some of the information in the letter for Jobcentre Plus may be adapted for these purposes.

Reimbursed expenses

The benefits rules on ignoring reimbursed expenses for public involvement are consistent across all benefits. People who are in receipt of any benefit will have reimbursed expenses for public involvement ignored - that is, reimbursed expenses will not be seen as earnings and will not affect their benefits, regardless of whether the involvement is in research, service provision or education, or with a charity, the NHS or a local authority. People who are paid for involvement should be provided with a payment slip that shows the amount of reimbursed expenses separately to the payment amount. If expenses are included in a single 'thank you' payment, the expenses portion of the payment will not be ignored and the whole payment will be classed as 'earnings'. For example, a 'thank you' payment of £25 that also covers any travel costs will be seen as £25 of earnings and this may affect the person's welfare benefits entitlements. Reimbursed expenses must exactly match the expenditure.

Notional earnings rule

The notional earnings rule does not apply to public involvement. It was fully withdrawn three years ago. The notional earnings rule previously stated that any payment offered for involvement would be treated as earnings, whether or not the payment has been accepted. Members of the public now have the option of refusing a payment for involvement, or asking for payment of lower amount, without it affecting welfare benefits.

One-off payments

The ruling which once ignored payments made for a single activity during a one-year period has now been withdrawn. Previously, Jobcentre Plus agreed to ignore payments for one-off activities, but this no longer applies. One-off payments are now treated like any other payment.

Use of high street or gift vouchers

High street or gift vouchers may be treated as earnings, and viewed by the benefits authorities in the same way as other forms of payment. These payments need to be declared in the same way as cash, cheques or bank transfers. However in some circumstances HMRC will treat vouchers as a gift and not subject to NI or tax deductions. In this case the Department for Work and Pensions follows suit and treats the vouchers as a gift that does not affect benefits. The vouchers can be used to obtain goods in supermarkets. An organisation that wishes to be able to provide vouchers for service user involvement that will be treated as gifts should contact their tax office to request a ruling. Low amounts such as a £30 voucher will be more likely to be agreed.

Averaging Rule

An averaging rule may be applied to payments that are above an individual's weekly earnings limit (if the welfare benefit they receive has this condition), so that it is 'averaged' over a longer period of time. Jobcentre Plus may apply this rule where there is a cycle of work or public involvement (e.g. every two weeks) or where the employer pays monthly or quarterly in arrears. For example, where the employer pays monthly in arrears someone receiving a benefit with a weekly earnings limit of £20 may be offered £80 for two involvement activities, and may be able to accept it if they request that it be averaged over four-week period, which would mean they have weekly earnings of £20, within their earnings limit. This only applies to payments for at least two activities within the averaged period. One of these activities could include preparation in advance of a meeting. The averaging rule should be requested in advance of the involvement and before any agreement to claim payment.

The Benefits Advice Service offers advice on how to apply for this ruling and what to do if the application is not successful.

Resources on welfare benefits
NIHR Letter for Jobcentre Plus
Benefits Advice Service

This free, confidential and personalised service (launched in January 2015) is coordinated by the Bedford Citizens Advice Bureau to support members of the public whose welfare benefits may be affected by payment for involvement.

Who is the Benefits Advice Service for?

members of the public involved with NIHR organisations or NIHR funded research projects

researchers and staff within NIHR organisations or NIHR funded research projects who are supporting members of the public to get involved

Some other health and social care research organisations also subscribe to this service. Other partners who are also part of the service are:

HRA

Social Care Institute for Excellence

NHS England

Health and Care Research Wales (was Involving People)

Information for NIHR organisations

Specially trained staff with knowledge of how payment for involvement might affect those in receipt of state benefits will be available to offer free personalised advice.

For staff, the service can provide:

advice on the implications of offering payments and reimbursing expenses to members of the public

advice on offering and processing payments and expenses for involvement.

It is important to allow members of the public with enquiries to contact the benefits advice service directly, rather than raising any enquiries on their behalf. This will avoid misinterpretation or confusion in any advice offered.

How to access the Benefits Advice Service

For more information on how to access this service, please contact the NIHR Centre for Engagement and Dissemination ced@nihr.ac.uk or call 020 88437117.

tell us the name of the NIHR organisation you are involved with, or the name of the NIHR programme funding the research project you are involved with

we do not need to know anything about your benefit situation.

we will give you an email address (or telephone number) so that you can contact the Benefits Advice Service directly

we will also give you a code - lease give this code to the service when you contact them.

the service prefers that the first contact is by email if possible - the service will then arrange a time to call you.

if you do not know if the organisation you are involved with is part of the NIHR, please contact the person who asked you to get involved

Citizens Advice Bureau (CAB)

You can find your local CAB either on the Citizen's Advice Bureau website or by telephoning 0800 144 8848 (for England) or 0800 702 2020 (for Wales).

Disability Rights UK

Helpful online source of information and advice on benefits. You can also obtain copies of their factsheets and publications by contacting Disability Rights UK on 0330 995 0400 (this is not an advice line).

Tax and employment status

NIHR is aware that there might be confusion around the tax implications of payment for involvement. Below we provide some guidance on how to navigate tax for involvement payments, however we advise organisations to seek independent expert advice on the matter if in doubt.

Organisations have the responsibility to understand the tax rules and apply them to their own systems and processes. Each organisation has to make their own decision if public involvement payments are employment income for tax purposes. Another important point to note is that for HMRC, a consistent approach to assessment, action and record keeping relating to payment is key.

Is involvement employment?

The finance and/or HR departments of universities and NHS trusts sometimes query the employment status (employed, self-employed, worker or volunteer) of people carrying out involvement. This is important because if someone is seen as 'employed' then they are entitled to a number of benefits including sick pay and so on.

Here are the HMRC definitions of the terms used above:

The first step to understand the potential tax implications of public involvement payments is to understand whether the public contributor is an 'employee' or not. HMRC have a useful online tool 'Check employment status for tax', which you can use to check whether someone might be considered as employed or self-employed in law for tax purposes.

Where it is determined that the person is not an employee, then the organisation should work out if the person is a casual worker or self-employed by reviewing the government's definition of worker, or self-employed.

Where public involvement activities are deemed to be 'casual work':

any form of contract will be akin to a zero hours contract

contractual or Statutory Sick Pay, and maternity or paternity pay are not payable

the organisation can offer the option of joining the business's pension scheme but the stakeholder pension will not apply

holiday pay pro-rata will apply

Once you have determined someone's likely employment status this information should help you decide tax implications, and whether they need to be registered as an employee or casual worker. It will be useful to discuss and agree this with your organisation's Finance and/ or HR departments/ key contacts.

Income tax

Tax will only be due on a person's income once it rises over the given personal tax allowance. There are two ways to manage tax implications that may arise from making payments for involvement work:

1. obtain a tax code for the person from HMRC and as advised deduct tax at source from the payment being made

2. if the person is self-employed, ask them to supply their HMRC self-assessment registration number - HMRC will accept that as they are registered for self-assessment it is the payee's responsibility for paying any tax that may be due

It is important to note that people who are in receipt of state benefits because they are unemployed and possibly have limited capacity for work, should not be asked to register as self-employed. This is because HMRC and Jobcentre Plus now share such information. The Jobcentre will be likely to treat a registration for self-employment as a declaration that the person has found employment and can have their benefit payments stopped.

It may also be possible for your organisation to obtain a 'dispensation' from the HMRC. This is a formal agreement that payments need not be taxed at source. This often resolves a number of concerns that are raised by university or NHS finance departments when paying people for involvement work.

HMRC EIM71105

The ' HMRC 2004 Employment Income Manual (EIM71105) on Research volunteers, lay participants and participants in clinical trials guidance' states that attending meetings to inform the research process and direction "are unlikely to fall within the definition of "earnings" for PAYE or NI purposes" and that as such "there will be no tax or NIC liability arising on the individual if the sums received do no more than reimburse the individual's reasonable costs of participating in the trial or research".

However, interpretation of this guidance and subsequent reliance on this to determine tax implications for public involvement payments can be tricky. Public involvement in research spans a variety of activities, and is not limited to participation in meetings (as explicitly referenced in the guidance). Furthermore, the EIM71105 guidance does not provide a definition of what 'reasonable costs' are. To address these issues, an organisation-wide approach is key. Some universities have decided to approach this by agreeing which involvement activities fall in line with the EIM71105, and deciding their own definition of reasonable, based on their interpretation of the guidance, organisational appetite to risk, and independent external advice. For this, it is key to engage with finance and HR departments, and public contributors where reasonable.

Where public involvement activities are in line with the EIM71105, these payments would not be classed as employment income by HMRC and consequently there would be no obligation to deduct tax. Where involvement activities do not fall within the EIM71105 guidance, then the organisation will need to further understand whether the public contributor is employed or not (see above).

IR35

Off-payroll working (IR35) is the short name for the "intermediaries" legislation, which is a set of tax rules that apply to those who work for a client through an intermediary, which can be a limited company or a "personal service company". This applies to many contractors. IR35 helps to stop contractors taking roles that would otherwise be paid employment, and to apply correct use of taxation in employment. As public contributors are (mostly) not contractors or personal service companies this would indicate this tax is not applicable to public involvement. As most public involvement that includes an offer of payment for involvement is performed without a contract, there is no mutual obligation, no control and it doesn't fit the definition of employment, it is highly unlikely that IR35 is applicable. It is nonetheless advisable to ensure that you review the individual circumstances alongside your finance department, and seek expert advice where needed.

Tax and employment status resources

HMRC 'Employment status checklist'

HMRC 'Check employment status for tax'

HMRC Income Tax: general enquiries

HMRC 2004 Employment Income Manual (EIM71105) on Research volunteers, lay participants and participants in clinical trials, pertaining to tax and involvement

More can be found about IR35 regulations on the GOV.UK website, including an IR35 helpline

ACAS Helpline provides clear, confidential, independent and impartial advice on employment rights and rules

Reward and recognition for children and young people involved in research

Children and young people involved in research should receive appropriate reward and recognition for their contributions. This demonstrates the value that you place on their time, commitment and expertise when involved in your research activities. Many of the things to consider when involving adults also apply when involving children and young people; however there are other specific issues that you should think about when planning involvement that includes young people.

You can find more information about involving children and young people in our guidance Involving children and young people as advisors in research.

Things to consider

Consult

Ask children and young people how they want to be rewarded and recognised. As with adults, appropriate forms of recognition may vary. For children and young people, these factors may include the age of those involved, and the level and type of involvement undertaken.
Where possible:

Clarify

A clear and consistent policy that explains how children and young people will receive reward or recognition, and for which activities, will help to clarify the process for everyone.
Where possible:

develop a policy that reflects with wishes of the children and young people involved

ensure the policy meets local organisational or institutional requirements (such as with local finance and HR departments)

Discuss

If working with, or recruiting through, a young person's organisation or an existing young people's groups, find out what local processes are in place.
Where possible:

discuss reward and recognition issues with the group's coordinator (or organisation) at the earliest opportunity

be prepared to discuss the options, as some children and young people's organisations involve young people as volunteers, or may offer other forms of reward to acknowledge their contributions

Expenses

As with adults, children and young people (and their parents) should not be out of pocket for being actively involved in research. For many, ensuring that expenses are covered can be the determining factor in a young person's decision to be involved, as some may find it difficult to meet these costs otherwise, even temporarily.
Where possible:

Payment

Bearing in mind the issues raised in this NIHR guidance on payment for public involvement, and the things to consider above, you may want to offer the options below to children and young people when discussing payment and reward for involvement. Find out what they would prefer and discuss what may be possible within your budget, and within your organisational or funder guidance.
You may also want to review these options regularly to ensure your chosen option remains the right one for the children and young people with whom you are working.

You should ensure that any methods to be used, and any levels of reward that you decide upon, are appropriate for the ages of those involved.

High street vouchers

High street vouchers are often the preferred option for rewarding young people where they are under the age of 16 years old and will not be in receipt of benefits. Gift vouchers that are redeemable in a range of high street shops are usually the most popular, but vouchers can be obtained for cinemas, restaurants and other activities (for example, see high street vouchers).

if this is the preferred option, ask the children and young people you are involving which vouchers they would like.

be aware that some organisations and institutions prohibit the use of gift vouchers, so check with your host organisation before making any offer

Monetary payment

Although not all children and young people under the age of 16 years will want to be paid, or be able to do so because of organisational policy, the offer of monetary payment can be a factor in enabling some children and young people to become involved in research. Offering payment may also increase the diversity of those you involve and broaden the range of perspectives included, for example young people who are living independently or may have to take time off from work to be involved. Payment may be especially appropriate for involvement activities that require more time or responsibility, or where gift vouchers are not the preferred option. The methods of payment should be appropriate, as some children and young people may not have bank accounts into which money can be paid. The methods may need to be flexible so that individual's circumstances can be accommodated. Be mindful of the legal restrictions that limit the times and amount of hours that children and young people aged under 16 can undertake as paid activity (see the 'Participation Works' document ' How to remunerate and reward children and young people's involvement ' for an explanation of the legal restrictions). Be aware that young people of working age over the age of 16 years may be in paid employment, or in receipt of welfare benefits. In these circumstances, the same considerations apply as for adults with regards to tax and benefits. The Benefits Advice Service is available to offer free, confidential advice for those involved with organisations or studies supported by NIHR.

Other forms of recognition

Children and young people's contribution to research should always be acknowledged and reported back to individuals and groups. Other examples of other ways that children and young people might be recognised for their contributions include:

organising group meals out, or other social events (or sports activities)

providing opportunities to learn new skills (such as designing and writing information, video production or website design)

providing certificates that acknowledge the young person's contribution for educational portfolios. It is helpful to personalise these and

provide details of the specific training or activity that the child or young person has been involved in

offering references for employers, colleges and universities

providing opportunities to share and celebrate success (for example, when reporting within an organisation or project, when publishing the research, or when presenting at conferences or other dissemination events)

exploring formal accreditation for extended involvement in longer-term projects, for example through ASDAN (Award Scheme Development and Accreditation Network) or the Open College Network in your area. This can be a very effective and appropriate way of acknowledging the work of individual young people. Time and cost implications, however, need to be explored before these opportunities are offered (NCB Guidelines, 2011)

More information

ASDAN (Award Scheme Development and Accreditation Network)

Children's Rights Alliance for England

National Children's Bureau's guidelines for research

Participation Works document ' How to remunerate and reward children and young people's involvement '

Further information

Examples of payment policies
NIHR Centre for Engagement and Dissemination recognition payments for public contributors
NIHR payment guidance for public contributors NIHR Letter for Jobcentre Plus

NIHR Briefing Notes for Researchers

Learning for Involvement

NHS Research & Development Forum
NIHR Central Commissioning Facility Reward and recognition for public contributors
Other guidance and resources

Acknowledgements

This resource was reviewed by the NIHR Centre for Engagement and Dissemination in March 2021 for accuracy and currency. The NIHR endorses this resource. NIHR staff cannot offer you advice on tax, National Insurance or welfare benefits issues; if in doubt you should seek appropriate expert advice. NIHR accepts no liability for decisions or actions taken as a result of its guidance. You are always recommended to take your own tax, finance or legal advice.

We would like to thank Judy Scott, independent consultant, for her advice and feedback on this guidance. Judy has been an integral part of the review process for this guidance document, providing expert advice on the effects of welfare benefits regulations on payment for involvement, and on the topic of payment for involvement overall.

This guidance is due for review in May 2022. If you have any suggestions for additional resources or amendments to this guide, please contact us ced@nihr.ac.uk

This version incorporates and updates content from several INVOLVE website pages, and the following previous guidance documents:

Mental Health Research Network and INVOLVE (2013) Budgeting for involvement: Practical advice on budgeting for actively involving the public in research studies, Mental Health Research Network, London and INVOLVE, Eastleigh. The authors of this resource were Julia Cartwright, Thomas Kabir and Lucy Simons. The project advisory group were: Suzy Bourke, Karen Burnell, Pam Carter, Jean Cooper Moran, Alison Ford, Ferhana Hashem, David Hindle, Jenny Newman, Chloe Sheppard, Natalie Simon, Christine Vial, Amander Wellings.

NIHR Programmes Payment and Reimbursement Rates for Public Involvement (2009) This guidance was developed by INVOLVE in agreement with the Department of Health.

Reward and recognition for children and young people involved in research - things to consider NIHR would like to acknowledge the contribution of the London Generation R Young Persons Advisory Group (YPAG) at Great Ormond Street Hospital, who helped to shape the content of this guidance and Louca-Mai Brady for sharing her expertise during its development.

INVOLVE IR35 regulations: Statement - October 2017

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Payment guidance for researchers and professionals

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This guidance has been compiled for a wide audience, but in particular it will be of value to: researchers who need to cost public involvement activities at any stage of the research process anyone in a professional role involved in costing public involvement, advising researchers on budgeting for involvement or

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Participation works: renumerating young people's involvement

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Participation works: renumerating young people's involvement

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Children’s images online: exploring ethical issues in participatory research projects

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Children’s images online: exploring ethical issues in participatory research projects

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Includes discussion around 'digital footprints' or 'digital tattoo' and questions around ownership, consent and the legacy of images, particularly when images are shared through the internet and social media. Also discussion around disability and rights and consent around use of children's images online

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Children’s images online: exploring ethical issues in participatory research projects

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Reimagining institutional ethics procedures in research partnerships with young people... (Powell et al 2023; paper)

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Reimagining institutional ethics procedures in research partnerships with young people... (Powell et al 2023; paper)

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Explores...role of institutional ethic procedures in light of power imbalances and tensions within three areas: (1) research co-production with young people, (2) collaborative cross-country research with partners, and (3) the relevance of ethical guidelines in diverse research contexts

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Moderated discussion: includes tensions between situated vs institutional ethics (and participation and protection rights) and supporting/challenging IRBs to see children and young people as competent research participants and co-researchers.

Also anonymity vs recognising contribution, co-authorship, digital footprints & relational ethics approaches

Involving children in sensitive research (and benefits)

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Research ethics in childhood research - Moderators, Karl Hanson, Spyros Spyrou, 2023

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Webinar on Research ethics in childhood research (leading to discussion paper)

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Webinar on Research ethics in childhood research (leading to discussion paper)

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The following paper was developed from this: https://journals.sagepub.com/doi/epub/10.1177/09075682231205505

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Celebrating 30 years of Childhood. A Journal of Global Child Research

Childhood has been at the forefront of Childhood Studies' major developments providing a forum for researchers to share their work, engage in critical dialogues with one another, and push the boundaries of the field in important and productive ways. To commemorate the journal's 30 th anniversary, the editors of Childhood invited several colleagues with whom they engaged in conversations at two webinars held in May 2023. Recordings of the webinars can be accessed below.

Webinar 1: The first theme we reflect upon is the ethics of research with children.

Webinar 2: Our second theme explores the teaching of 'global childhoods' in Childhood Studies, a topic that has gained prominence in this increasingly globalized field

Webinar 1

Your browser does not support video playback

Webinar 2

Your browser does not support video playback

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The Journal Childhood - Department of Education and Lifelong Learning

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Childhood has been at the forefront of Childhood Studies' major developments providing a forum for researchers to share their work, engage in critical dialogues with one another, and push the boundaries of the field in important and productive ways.

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Research with children: ethics, safety and promoting inclusion | NSPCC Learning

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Research with children: ethics, safety and promoting inclusion | NSPCC Learning

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Once you have identified potential risks, you should establish how you can avoid or minimise them.

Explain research confidentiality and obtain consent

Before taking part, children should understand the nature of the research and what will be expected of them.

It is important to explain confidentiality to the child before they give their consent and at the beginning of the research process. Explain:

how you will use what they tell you

how you will keep that confidential

who else will see their data

when you will have to break confidentiality and the process that you will follow.

> Find out more about sharing information
Adapt the collection methodology

The way information is collected can minimise distress caused to children. For example:

position sensitive questions in the middle of an interview or focus group session to allow the children to warm up and cool down from these topics

take breaks during data collection

conduct the research in a friendly and comfortable environment

avoid times of day when support services aren't available.

Respond to distress and disclosures

It's important to have a clear plan for responding to children's distress or disclosures of harm to themselves or someone else.

You should have a process in place for referring child protection concerns. You should also provide information or encourage participants to seek help when an unmet need, such as a mental health concern, is disclosed.

Debriefing children at the end of the research can help identify any needs. This also provides another opportunity to refer participants to appropriate help or address any concerns.

Signpost to sources of further support

It is good practice to give children information about sources of support and remind them of these throughout the process.

A thank you leaflet containing information and contact details is particularly useful and should be given to all participants.

Childline provides confidential help and advice to children or young people. Calls to 0800 1111 are free and children can also contact Childline online. You can also download or order Childline posters and wallet cards.

Assess and mitigate risks to researchers

You should also consider the potential impact of research on the researchers.

If researchers feel affected by what is discussed during the sessions, they should seek support through supervision with their manager. It may also be helpful to direct them to the NSPCC helpline to talk about anything that is concerning them.

Research supervisors should ensure that proper attention is paid to the researcher's safety, particularly in lone working situations.
> Take a look at our guidance on lone working
Set out and approve your research plan

You should produce a research plan which clearly outlines, assesses and provides mitigation for potential risks.

Where possible, we recommend that plans for research with children are approved through a rigorous ethics review process by an appropriate ethics body.
> Read more about how the NSPCC approaches research governance

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Research with children: ethics, safety and promoting inclusion | NSPCC Learning

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Explains what researchers need to consider when involving children in their research and includes information on ethics in child research and identifying risks.

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The complexities and contradictions in participatory research with vulnerable children and young people: A qualitative systematic review (Bradbury-Jones et al 2018)

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The complexities and contradictions in participatory research with vulnerable children and young people: A qualitative systematic review (Bradbury-Jones et al 2018)

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The complexities and contradictions in participatory research with vulnerable children and young people: A qualitative systematic review

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Participatory research carried out by or with children, has become a well-established and valuable part of the research landscape investigating childr…

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Working in partnership with people outside of the university system: Co-Production Collective (June 2023)

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Working in partnership with people outside of the university system: Co-Production Collective (June 2023)

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Co-Production Collective: All about Ethics (Blog and link to report) June 2023

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Co-Production Collective: All about Ethics (Blog and link to report) June 2023

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June 28, 2023

Helen Craig shares findings and insights from her and her team's explorations into how research ethics works in relation to co-production, public involvement and engagement.

In recent months a group of us, with a little funding from Co-Production Collective, have been exploring research ethics processes in universities - and ethical behaviour.

We spoke to over 50 people from a variety of backgrounds including co-producers, public contributors, researchers and those working in the field of ethics from outside of universities. The project team was made up of public contributors, UCL researchers and UCL staff members involved in public engagement and co-production.

As a result of this work, we have developed a guidance document which is available as a PDF and Word Document to share our findings and advice and a project report which is available as a PDF and Word Document that covers what we found in more depth. Our key takeaways were:

Responsibility: Ethics are everyone's responsibility and should be a consideration throughout the life of a project. The chance to discuss these issues with experts is valued and desired- but doing this through the research ethics review process is not always the best or only option. ‍

Processes: Current research ethics processes can be seen as unsuitable for public involvement and engagement, non-inclusive of public contributors, and a "tick box" exercise.

Inconsistency: Due to a lack of clear definitions between research and public involvement or engagement, inconsistent decisions are being made about the need for formal research ethics approval for projects.

‍Power: Involving public contributors in the ethics process helps to ensure that research will be considered ethically acceptable to the people who will be taking part. Equitable treatment and power sharing are key to collaboration at this stage.

We suggest some next steps on each of these areas at the end of the report. But here we wanted to take some time as a team to reflect on why we worked on this project, what we found and where we could go next.

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Helen Craig - Public Engagement Manager at UCL. Member of Co-Production Collective "I wanted to be involved in this project because it seemed like people within and beyond UCL were unclear on the ethical dimensions of their work with partners outside of academia. This included when ethical approval was needed and what constituted ethical behaviour when carrying out Public Engagement, Patient Public Involvement and Engagement or co-production. Especially in my role as someone who supports researchers to do projects in this area, I felt like I couldn't give them the definite answers they needed. Somewhat naively, I thought this was just a problem of time, and understanding. Surely the answers were our there! However, as we started talking to people it became clear that this was an area with no easy answers - there's uncertainty and grey areas throughout. One early interview remarked that looking into this topic was like "opening Pandora's box!" Still, I'm proud that we have developed the guidance we have, and that the project report stands as an accurate summation of the issues raised with us. I hope they spark future work! It's also been an absolute pleasure working as a team. Lynn, Jade and Emeline have inspired and driven me, sharing their experiences and leading major changes in how the project was done, who we spoke with, and on the resources produced. The work has moved from an internal focus to one that's more reflective and open to all. If I did this project again, I would only wish to include more in the team, especially representatives from the world of ethics committees, funding and publishing."

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Jade Davies - Research Assistant at Institution of Education, UCL's Faculty of Education and Society
"As somebody at the very start of my career, I wanted to be involved with this project to better understand how to make sure my future work with public contributors is as ethical, sensitive, and meaningful as it can be. I have been really lucky to have the guidance of wonderful colleagues, who have been paving the way for true co-production and meaningful engagement. But I know this isn't common. In my conversations with other researchers, I learned that lots of people are confused about what the terms co-production, patient and public involvement (PPI), and public engagement mean, and how they can meaningfully and ethically engage in these practices.
In the end, we found there is a lot of diversity in different institutions' approaches to when are searcher needs to apply for ethical approval to work with public contributors. Indeed, there were even differences within the same institution, where smaller 'local' ethics committees have different guidance and expectations. Beyond these technicalities, however, it became clear that our broader approach to ethics needs a re-think. Some people seem to see ethics as a "tick-box" exercise and speed through applications in a bid to gain prompt" ethical clearance". But being ethical is much more complex than any one application would ever be able to capture. Instead, we should strive to be ethical thinkers, thinking beyond standard considerations such as informed consent and confidentiality and understanding that ethical considerations are nuanced: different for each population, each team of researchers, and each individual research project. While formal ethical review is not the necessary path for some forms of engagement, an ethical thinker will acknowledge the room for ethical considerations, even in these situations. I am looking forward to taking these principles forward in my future work to make sure I am meaningfully and respectfully collaborating with public contributors and hope the work we have done will help other researchers on their journey to engaging ethically with the public. "

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Lynn Laidlaw - Patient and public contributor, co producer and peer researcher. Member of Co-Production Collective. "I wanted to be involved with this project for multiple reasons including a long standing association with the Health Research Authority (HRA)

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Emeline Han - PhD student at Institute of Education, UCL's Faculty of Education and Society "In my own experience as a PhD student at the IOE (Collectively, these conversations prompted me to reflect on three main problems. Firstly, they pointed to a lack of clarity on the boundaries between participating in research and being involved in, engaging with, or co-producing research. Secondly, they revealed a lack of consensus between stakeholders on what should be the remit of research ethics review. Thirdly, they raised the question of whether traditional research ethics review is compatible with participatory research, especially if this process does not include public contributors. Unfortunately, what people told us suggested that current institutional ethics processes may reinforce the power asymmetries between academic researchers and public contributors that participatory research seeks to challenge. Participatory research calls for shared spaces that foster open and ongoing discussions about ethics between researchers and public contributors, rather than top-down and one-off decisions on what is ethical. While our project has not found easy answers to all the above problems, I hope that the resources we have developed will encourage and equip researchers to engage ethically and meaningfully with their public contributors, with or without formal ethics review. I also hope that our resources, which feature a range of voices and experiences, provide a starting point for exchange of different perspectives that will lead to wider and deeper systemic changes in the future. " UCL's Faculty of Education and Society), going through ethics review for participatory research has been a helpful and flexible process facilitating thoughtful and thorough consideration of ethical issues. However, as I spoke to various stakeholders within and beyond UCL during this ethics project, I realised that this was not necessarily the case for other researchers or public contributors. For example, several researchers encountered reviewers who did not appreciate the evolving nature of participatory research, or deemed public contributors 'too vulnerable' to work with. In the same vein, some public contributors felt ethics review was a paternalistic process being done 'to' them rather than 'with' them as equal partners. Ethics committees also struggled to make consistent decisions on whether researchers' work with public contributors required formal ethics approval, given the 'grey areas' between public involvement activities and research activities. as part of their public involvement network and a real interest in the whole concept of ethical research and behaviour. I thought I understood "pure" research ethics and many of the wider ethical issues surrounding research. On reflection I understood the issues through the lens of MY perspective and experience, including feeling that research ethics are often "done" to public contributors, not with them. I was surprised, but yet not surprised, when the public contributors I spoke to told me that they hadn't really been involved in the ethics approval process, unless there were specific issues to be overcome that it was perceived they could assist with. Also, the people I spoke to concentrated on the wider ethical issues that were important to them, including equality, diversity and inclusion and ensuring that coproduction was authentic, not faux production. What I don't know is, was this due to a lack of understanding of "pure" research ethics or that they just found the wider ethical issues in research more relevant to them. I feel it raises an interesting question about research ethics in general, has the context changed? Are we at a stage where research ethics should be looking at the wider ethical issues in research rather than concentrating on research participation as codified by the declaration of Helsinki? If so, in what way does the process of seeking ethical approval need to change, including membership of Research Ethics Committees and structures to enable this? What are the wider ethical issues that need to be considered? How do we facilitate this conversation and who should be involved in it? Who gets a say about the issues research ethics should engage with?
As always, I have more questions than answers, including how do I reconcile the natural desire of researchers to have a space to discuss ethical issues and have a committee structure to do so, with the "othering" discomfort that this produces in me as a public contributor to, and participant in research? I feel that this overlaps with what I perceive as the hierarchical structure of academia. Will this culture prevail despite increasing strategies and frameworks promoting co-production and involvement? Perhaps all we can hope to do is highlight some of the issues and potentially start a conversation and debate which includes all the actors, including external ones such as journals. It feels very important to move beyond "getting" ethics as a tick box process, to thinking ethically, both with regard to research participation and the wider ethical issues in patient and public involvement and engagement (PPIE)/ co production. How can this be achieved in an inclusive way that involves everyone in the process? "

If you would like to find out more, we have developed a guidance document which is available as a PDF and Word Document to share our findings and advice and a project report which is available as a PDF and Word Document that covers what we found in more depth

‍

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June 28, 2023 Helen Craig shares findings and insights from her and her team's explorations into how research ethics works in relation to co-production, public involvement and engagement. In recent months a group of us, with a little funding from Co-Production Collective, have been exploring research ethics processes in universities - and ethical behaviour.

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7P Model highlights the importance of purpose, positioning, perspective, power relations, protection, place and process in relation to youth participation

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Re-conceptualising youth participation: A framework to inform action (Cahill & Dadvand 2018)

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Re-conceptualising youth participation: A framework to inform action (Cahill & Dadvand 2018)

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Author links open overlay panelHelen Cahill, Babak Dadvand

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Re-conceptualising youth participation: A framework to inform action

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To date, various participation models have been proposed to assist those who want to involve young people in program design, delivery and evaluation. …

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Involving young people in sexual health research and service improvement: conceptual analysis of patient and public involvement (PPI)in three projects (Lewis et al. 2022)

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Involving young people in sexual health research and service improvement: conceptual analysis of patient and public involvement (PPI)in three projects (Lewis et al. 2022)

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Guidelines for Involving Young People with Lived and Living Experience of suicide in suicide research

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Guidelines for Involving Young People with Lived and Living Experience of suicide in suicide research

# data[].attributes.headline
Strategies to Engage Systematically Marginalized Youth and Their Families in Research Using High-Tech Methods (Hardin et al. 2022)

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Strategies to Engage Systematically Marginalized Youth and Their Families in Research Using High-Tech Methods (Hardin et al. 2022)

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Hardin, Heather K. PhD, RN; Bender, Anna E. MSW, LSW; Killion, Cheryl M. PhD, RN, FAAN; Moore, Shirley M. PhD, RN, FAAN

Author Information

Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, Ohio (Drs Hardin, Killion, and Moore); and Jack, Joseph and Morton Mandel School of Applied Social Sciences, Case Western Reserve University, Cleveland, Ohio (Ms Bender).

Correspondence: Heather K. Hardin, PhD, RN, Frances Payne Bolton School of Nursing, Case Western Reserve University, 10900 Euclid Ave, Cleveland, OH ().

This work was supported by the National Institutes of Health [P30NR015326] and [T32NR015433].

We are grateful to our research participants and our research staff for their role in the study presented herein. We thank Matthew McManus for his editorial assistance in preparing this article.

The authors have disclosed that they have no significant relationships with, or financial interest in, any commercial companies pertaining to this article.

Advances in Nursing Science | DOI: 10.1097/ANS.0000000000000421

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Strategies to Engage Systematically Marginalized Youth and... : Advances in Nursing Science

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arents. Using codebook thematic analysis, 5 facilitator themes (develop skills, ensure health, build understanding, promote safety, and help others, youth-initiated interest) and 4 barrier themes (anxiety and fear, skepticism, confusion, and unfamiliar/unknown experience) were identified. Youth and parent responses informed proposed guidelines for recruiting and engaging families in research using high-tech methods, particularly those from historically and systematically marginalized communities....

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YPs blog: YPAG payment and emotional labour

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YPs blog: YPAG payment and emotional labour

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Reflections on Young People's Advisory Groups (YPAGs) ; payment, emotional labour, legitimacy and some take homes.

I've decided to do a blog about my highlights from being on Young People Advisory Groups (YPAGs) over the past few years, as I step into the 26-30 age bracket. There is always some anxiety around turning 25+ when you have been involved in YPAGs because there is little or no clarity on what happens after 25 (in the patient and public involvement world) - are there more / fewer opportunities for meaningful involvement after 25? and sometimes after spending years on a YPAG, it means losing contact with some peers - other people who understand your experience-and losing a couple of hours of paid work per month.

Losing a couple of hours of paid work per month came last on the list because I know most of the young people who get involved in this work don't do it for the money and payment of lived experience contributors is a 'tricky' subject at any age. To me, payment has always made sense - it seemed like a straightforward thing; if everyone else in the room is getting paid for their time then why are the lived experience experts / advisors not getting paid or why was their payment tricky?

To those who chose to not get payment, it was mostly because of the impact it would have on their benefits. Sometimes no payment is offered and this, in my opinion, means that we only engage young people who can afford to participate without payment. No payment does not consider the socioeconomic disadvantage faced by marginalised groups such as young people from the LGBTQ+ community or ethnic minorities. By not offering payment, all you are doing is widening the gap between those that can afford to and those that cannot.

My first patient involvement experience wasn't on a YPAG, it was on an adult group as a volunteer. I welcomed this because it provided insight into a part of the healthcare system which, if I hadn't been a long-term patient, I wouldn't have engaged much with. Over the next few years, I met and spoke to some people who had dedicated a lot of years to their lived experience work. This really influenced my perception of the work and its impact on the system and on self - which is an area I am still exploring.

Young People's Advisory Groups (YPAGs) and emotional labour

Most YPAGs meet only 1-2 times per month for an hour or 2 and this is usually a conversation around a specific topic or a part of the study they have been recruited for.

There is some joy in knowing that your contribution(s) as part of a YPAG can influence a national policy and when research becomes more accessible globally, impact might be greater. It is also a good way to build confidence, connect with like-minded people, and the opportunity to explore different ways to talk about emotions or experiences. For example, I had never written about my experiences living with a physical diagnosis until this blog I wrote for the McPin Foundation. Some of the training offered on YPAGs included public speaking training, peer mentoring and graphic design. However, there is also some frustration caused by 'push backs' from the researchers (some which you never meet the whole time you're on a YPAG) or repetitiveness of meeting agendas - That is not genuine co-production!
Co-production is a way of working where service providers and service users work together to reach a collective outcome. It means that projects or campaigns are co-designed and co-delivery with service users. This requires organisations and professionals to share power to create and implement actions rather than treating service users as passive recipients. - Mind & Involve
In most YPAGs, there's no expectation to speak about any lived experience when reviewing work - but it was difficult to see how my contribution was 'credible' or 'legitimate' if I don't include any personal experience. Being 'authentic', whilst on YPAGs, is often interpreted as 'always sharing or oversharing experiences' in every conversation. It can be assumed that most (if not all) contributions by the group to documents / workshops etc carries some degree of lived experience. We live with it, we carry it, we bring it & we share it. We hope in return it is listened to, respected, and leads to change.

Legitimacy of the work (my contribution) was also something I struggled with in the early stages of my YPAG journey. I had healthcare work experience and some certificates to cover my academic credentials. However, from my lived experience, I thought I had nothing. Questions I still have whilst typing this; how do lived experience contributors measure the legitimacy of their work? 'What are researchers and health professionals' opinions on the legitimacy of lived experience work?' I have sat in conversations about how young people's contributions to YPAGs can be recognised; 'thank you letters' and 'certificates' are the top two suggestions. The certificate conversation usually hits a brick wall when questions around 'its recognition beyond the YPAG' or 'accreditation' start coming up. In the future, could there be a 'standardised' certificate for YPAG involvement?

Payment is also linked to emotional labour of participation on YPAGs. Payment, in cash or vouchers, is an influencing factor when individuals struggle with questions around 'whether it is worth it or not?'

Most young people are on multiple YPAGs - "The next one will be better" - I used to say to myself, or in the hope of gaining 'different experience' or to be more impactful. Personally, I have been there, especially at a point when I saw examples of good involvement. To me, joining multiple YPAGs meant increasing the reach of my experiences and the experiences of those young people who were not ready to speak about their experiences. However, now I measure my impact as; how many young people I can support on their involvement journey and how many seats I have held as a young person and, after I leave, will still be reserved for another young person. This has helped me cope with sustaining this work.

There is flexibility, being able to pull away when it gets too much, when on a YPAG. In addition to this, some YPAGs offer routine check-ins and wellness plans which are respected and followed. Patient and Public Engagement Coordinators, who usually lead the YPAG are sometimes mentors and influence careers into peer research.

During my time as a member of Sprouting Minds, I've been part of the young person's advisory group for SPARX, one of the research projects on the Digital Youth Programme, working closely with Kareem & Camilla as well as researchers from other universities involved in the programme - SPARX is about building resilience through gameplay e-therapy (digital game) and equips young people with life skills to power through stressful and negative emotions.

Initially, I was nervous about joining the project; I haven't picked up a gaming console in a few years and because the intervention (SPARX) is a digital game I assumed I would need to a 'tech guru' to meaningfully contribute to the conversations. However, the researchers and other members of the advisory group were very helpful in ensuring I realised my 'value'; the insight I brought to the table from my lived experience of depression and 'fresh insight' as a non-gamer / not a tech guru. This experience / opportunity has also allowed to enhance my presentation skills - I presented SPARX at the Mindtech Symposium 2022 at the Royal College of Physicians in London, and build my network in digital youth research.

Take homes for young people:

* Your well-being is more important than any research study

* Your experiences are valid and valuable

* You're not being unreasonable when you ask for or expect more from being on a YPAG

* There are some groups / organisations out there which are fighting for your corner!

Take homes for researchers or health professionals working with Young People:

Lead researchers should meet all members of the YPAG

Honesty from researchers / funders on the planned impact and influence of a YPAG before it is put together will help set expectations

Experiences of being on YPAG need to be evaluated and learning to be implemented

There should be investment in safeguarding procedures, engagement exercises and ensuring activities are meaningful before recruiting for a YPAG

When young people join YPAGs, this might be their first time giving a shot to trusting 'the system' again and your interactions with them have a long-standing impact

Incentives for participation on YPAGs should reflect the value of the young people's lived experience. Living wage looks should be the base rate.

Response to Stuart's blog from Professor Elvira Perez- Vallejos, Professor of Digital Technology for Mental Health at the University of Nottingham and Involvement Lead for the Digital Youth Programme.

Stuart's blog made me reflect on the impact -both positive and negative- Digital Youth can have on members of its YPAG, aka Sprouting Minds. As Youth Lead, his blog reminds me of the responsibility we all carry to, not only support and safeguard each member of the YPAG, but to be a source of inspiration and positive force for change. It has never occurred to me before that Digital Youth can be perceived by Sprouting Minds as another part of 'the system', with its intrinsic hierarchies and power dynamics. Academia and higher education can be perceived as a place where young people, especially those struggling with their mental health, may feel they do not belong to. Is Digital Youth doing enough to break existing barriers, to dismantle stereotypes, and rigid preconceptions about what academia may mean to some young people?

Being aware and mindful of this important mentoring role is crucial to foster a culture of trust and provide opportunities for members of Sprouting Minds to initiate conversations about their aspirations, their future plans and how Digital Youth can influence decisions about career progression, becoming a researcher or even aspiring them to complete a PhD. However, for these conversations to be initiated, a trusting and safe relationship has to first emerge. As Youth Lead, Stuart's blog reminds me that Digital Youth is also responsible for facilitating interactions that go beyond established limits and boundaries, where we are encouraged to show a personal interest about the aspirations and future plans of Sprouting Minds members. From writing a letter of recommendation to initiate an informal conversation to brainstorm possibilities about the future, there are plenty and significantly enriching experience Digital Youth could provide to Sprouting Minds.

On my to do list today I write 'check that I have personally met all Sprouting Mind members, especially those that joined the YPAG after the co-production work we did to develop our successful funding application.

About the authors

Stuart is a member of Sprouting Minds, the Digital Youth young person's advisory group and. He has been working with our researchers on the design and development of a serious online game for young people with depression. This blog expresses the personal views and lived experience of Stuart, and does not represent the opinion of Sprouting Minds or the UKRI Digital Youth Programme. If you were affected by this blog and would like to seek advice and support around issues it raised you can contact the following links:
https://www.youngminds.org.uk/
whatsupwitheveryone.com
The Samaritans
Elvira Perez- Vallejos is a Professor of Digital Technology for Mental Health at the University of Nottingham and Involvement Lead for the Digital Youth Programme. She is interested in the ethical challenges embedded in digital solutions for mental health including the widespread of machine learning/AI methods on the development of new mental health interventions. She has experience on RRI (Responsible Research and Innovation) and Data Ethics as well as on Data Privacy, Online Consent, User-centric design, Creative Practices for Mutual Recovery, Experimental Psychology, Participatory research, Children and Young People, and Older Adults.

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Reflections on Young People's Advisory Groups (YPAGs);payment, emotional labour, legitimacy and some take homes

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By Stuart, member of Sprouting Minds Young Person's Advisory Group and Elvira Perez Vallejos, Professor of Digital Technology for Mental Health at the University of Nottingham and Involvement Lead for the Digital Youth Programme. Reflections on Young People's Advisory Groups (YPAGs) ; payment, emotional

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Within this sector of mental health research, I have been collaborating as a part of the Digital Youth research programme and Sprouting Minds group, with researchers Jess, Petr and Ellen, who work with a co-designed fluffy robot called Purrble. This robot is currently being used as an emotion regulation intervention for young people who may be struggling with self-harm.

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Hi guys,

I haven't written in a long time as I have had 11+ exams and the Christmas holidays. I hope you are ok and received all your favourite things from Santa!, let me tell you a bit about the Young Persons Advisory Group's last meeting

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Trauma-informed co-production: guidance (Cherry/West Yorkshire H&C Partnership 2022)

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Trauma-informed co-production: guidance (Cherry/West Yorkshire H&C Partnership 2022)

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Qualitative Findings From the MindKind Study

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Evidencing the Impact of Web-Based Coproduction With Youth on Mental Health Research (Fernandes et al 2023)

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Evidencing the Impact of Web-Based Coproduction With Youth on Mental Health Research (Fernandes et al 2023)

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Original Paper

¹ Department of Psychiatry, University of Oxford, Oxford, United Kingdom

² Centre for Mental Health, School of Population and Global Health, University of Melbourne, Melbourne, Australia

³ Centre for Mental Health Law & Policy, Indian Law Society, Pune, India

⁴ Department of Psychiatry & Behavioral Sciences, University of Washington, Seattle, WA, United States

⁵ Department of Global Health, University of Washington, Seattle, WA, United States

⁶ Department of Epidemiology and Biostatistics, University of California San Francisco, San Francisco, CA, United States

⁷ Higher Health, Higher Education and Training: Health, Wellness, and Development Centre, Pretoria, South Africa

⁸ Mindkind Young People's Advisory Group, Centre for Mental Health Law & Policy, Indian Law Society, Pune, India

⁹ Mindkind Young People's Advisory Group, Department of Psychiatry, University of Oxford, Oxford, United Kingdom

¹⁰ Department of Psychiatry, University of Cambridge, Cambridge, United Kingdom

¹¹ Sage Bionetworks, Seattle, WA, United States

*these authors contributed equally

Corresponding Author:

Blossom Fernandes, PhD

Department of Psychiatry

University of Oxford

Warneford Hospital

Oxford, OX3 7JX

United Kingdom

Phone: 44 7985089247

Email: blossom.fernandes@psych.ox.ac.uk

Background: Public involvement in research is a growing phenomenon as well as a condition of research funding, and it is often referred to as coproduction. Coproduction involves stakeholder contributions at every stage of research, but different processes exist. However, the impact of coproduction on research is not well understood. Web-based young people's advisory groups (YPAGs) were established as part of the MindKind study at 3 sites (India, South Africa, and the United Kingdom) to coproduce the wider research study. Each group site, led by a professional youth advisor, conducted all youth coproduction activities collaboratively with other research staff.

Objective: This study aimed to evaluate the impact of youth coproduction in the MindKind study.

Methods: To measure the impact of web-based youth coproduction on all stakeholders, the following methods were used: analysis of project documents, capturing the views of stakeholders using the Most Significant Change technique, and impact frameworks to assess the impact of youth coproduction on specific stakeholder outcomes. Data were analyzed in collaboration with researchers, advisors, and YPAG members to explore the impact of youth coproduction on research.

Results: The impact was recorded on 5 levels. First, at the paradigmatic level, a novel method of conducting research allowed for a widely diverse group of YPAG representations, influencing study priorities, conceptualization, and design. Second, at the infrastructural level, the YPAG and youth advisors meaningfully contributed to the dissemination of materials; infrastructural constraints of undertaking coproduction were also identified. Third, at the organizational level, coproduction necessitated implementing new communication practices, such as a web-based shared platform. This meant that materials were easily accessible to the whole team and communication streams remained consistent. Fourth, at the group level, authentic relationships developed between the YPAG members, advisors, and the rest of the team, facilitated by regular web-based contact. Finally, at the individual level, participants reported enhanced insights into mental well-being and appreciation for the opportunity to engage in research.

Conclusions: This study revealed several factors that shape the creation of web-based coproduction, with clear positive outcomes for advisors, YPAG members, researchers, and other project staff. However, several challenges of coproduced research were also encountered in multiple contexts and amid pressing timelines. For systematic reporting of the impact of youth coproduction, we propose that monitoring, evaluation, and learning systems be designed and implemented early.

JMIR Public Health Surveill 2023;9:e42963

doi:10.2196/42963

Keywords

Background

Increasingly, participatory and collaborative research methods have been used to reduce the gap between evidence and implementation [-]. One way to do this is to involve target groups in research, using coproduction processes, particularly the involvement of youth, to reflect their needs in research [,]. Coproduction is "an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge" []. Coproduction aims to ensure that the knowledge generated is informed by the needs of the target group, is relevant to them, and has greater applicative value in their local setting []. This is somewhat different from what Baum et al [] describe as participatory action research, where participants are involved in a reflective manner, by collecting and analyzing the data and then determining the outcome. Thus, the active involvement of knowledge users (eg, young people with mental health difficulties) in research, who are experts in their experience, aims to enhance the quality and utility of research.

Coproduction in Mental Health Research With Youth

Different forms of mental health researcher and knowledge user partnerships have grown in popularity, primarily in high-income settings, particularly among young people []. With most lifelong mental health conditions having an onset by the mid-20s [], there is a vital focus on better understanding youth mental health needs and curating services tailored to their needs. Several benefits of such youth-researcher collaborations have been identified. For example, coproduction with youth increases the relevance of research aims [] and facilitation of recruitment [,] and helps the production of richer and more reliable data []. Researcher-intensive tasks such as data analysis, the presentation of findings, and dissemination also benefit from youth involvement []. Coproduction also enables incorporating lived experiences effectively; with regard to user outcomes, coproduction helps young people develop transferable skills [,] and research skills [] and to understand their own mental health better [].

Complexities and Challenges of Undertaking Coproduction With Young People

Though coproduction of knowledge may seem like an elegant solution to ensure the implementation of evidence-based practices, it is a highly complex, context-specific experimental process that is often time-consuming and resource intensive []. Effective coproduction requires collaborative effort at every stage of the research process []. The environment is important, as are researcher traits, such as openness, tolerance, and flexibility [], and organizational qualities, such as building trustworthy relationships and innovative methodologies [,].

The complex process of coproduction with youth comes with specific challenges, as complicated power dynamics may need to be identified, acknowledged, and addressed. Researchers may need to address youth-adult hierarchies [], which may disrupt effective collaborative work. If such traditional patterns are not disrupted, tokenism, difficulties in conflict resolution and shared decision-making between youth and researchers can ensue []. Research processes that ensure coproduction with youth require additional time and resources owing to a number of cultural, ethical, and safety considerations, such as assent-consent procedures for legal minors [] and ensuring safe practices while also recognizing their agency [].

Measuring the Impact of Coproduction

Few studies report the impacts of youth coproduction [], complex processes of collaboration, and nonlinear impacts for stakeholders []. The MindKind study used mixed methods to elicit young people's views on data governance and to assess the feasibility of setting up a user-controlled global mental health databank []. This study was conducted in India, South Africa, and the United Kingdom. Participants aged 18 to 24 years (16 to 24 years in the United Kingdom) were enrolled on a separate website and randomized into 1 of the 4 data governance options []. Using an app designed for the study, participants were invited to share data on key active ingredients of mental health, such as sleep, body movement, social connections, and positive experiences over a 12-week period. Study participants in the qualitative arm took part in country-specific and multinational group deliberative democracy sessions [] focused on building a consensus pertaining to the governance of a future mental health databank. Each arm of the study had a strong focus on coproduction.

We note that the findings discussed in this manuscript do not include any data from the main MindKind study or any of the randomized arms. The objective of this manuscript was to describe the impact of coproduction with youth on different stakeholder groups []. Coproduction with youth was designed to influence both the qualitative and quantitative study arms (ie, youth were coresearchers), and we evaluated such impact of youth acting as coresearchers on key stakeholder groups. Advisors in the project did not participate in the qualitative or quantitative study conducted as part of the MindKind study.

Ethics Approval

Ethics approval for the MindKind study was obtained from each of the country sites, namely the United States (WIRB #20212067), the United Kingdom (University of Cambridge, Department of Psychology Research Ethics Committee: Ref. PRE.2021.031 and University of Oxford: Ref R73366/RE00), South Africa (Walter Sisulu University #029/2021 and the Department of Higher Education and Training), and India (India Law Society #ILS/242/2021 and Health Ministry Screening Committee).

Overview of Youth Coproduction

Each MindKind study site employed a full-time youth lead or professional youth advisor (youth advisor), to convene and run a YPAG in each country site (India, South Africa, and the United Kingdom) and advise on all aspects of the study. The youth advisor was a young person aged 18-23 years who had lived experience of mental health challenges. The in-country YPAGs in each site comprised of young people with lived experience of mental health challenges aged 18-24 years (16-24 years in the United Kingdom), known as YPAG members. In addition to the in-country YPAGs, around 3 to 4 YPAG members from each site joined an international YPAG to advise on broader study questions.

Each youth advisor had 1 vote on the study's Steering Committee and, therefore, actively participated in study decision-making. Sessions conducted with the in-country and international YPAGs were planned collaboratively by the research teams and led by the respective youth advisors. Sessions were recorded, and feedback shared by the YPAGs was reported by the youth advisors to the research teams via a web-based platform called Airtable. Researchers were then required to respond in Airtable to clarify whether the feedback had been actioned, and if not, why. Youth involvement in MindKind is described in .

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Figure 1. Youth involvement in the MindKind study.

Data Sources

Coproduction with youth occurred during the study period between September 2020 and July 2022. Data collection to evaluate the impact of coproduction was conducted sequentially in 2 stages with 4 sets of stakeholder groups: youth (advisors and YPAG members), researchers (staff who contributed to research design, data collection, and analysis), decision makers (principal investigators and funders), and support and administrative staff (defined broadly to include anyone who undertook substantial administrative and support responsibilities as part of their role).

First, we collated various project documents generated between September 2020 and January 2022, such as meeting recordings and minutes, project descriptions, and work plans, to determine the coproduction outcomes relevant to all stakeholder groups (youth, researchers, decision makers, and administrative staff). A total of 17 documents were downloaded from the project database for analysis. A summary of these data sources is presented in . The outcomes identified at this stage allowed us to refine subsequent data collection on significant changes for the 4 stakeholder groups.

Second, building on the identified outcomes, we generated data based on the Most Significant Change (MSC) technique on the main changes that resulted from coproduction with youth for the 4 stakeholder groups, that is, moving from the outcomes that were intended to take place to the impacts that actually took place []. This technique involved gathering stories of the MSCs from stakeholders via open questions to distill key learning about the study and recommendations for the future. In this study, MSC technique meant gathering views from the 4 stakeholder groups on what had changed or had been impacted as a result of youth coproduction. Researchers and youth advisors implemented the MSC technique via web-based in-depth group discussions with in-country and international YPAGs. In these group discussions with YPAG members, the youth advisor in that study site and the lead authors gathered youth views on what impacts they felt had taken place as a result of youth coproduction.

For other stakeholders (ie, researchers, decision makers, and administrative staff), an open-ended web-based questionnaire solicited views on significant changes across 4 to 5 specified outcomes for each stakeholder group. This web-based questionnaire was emailed to all stakeholders in the study and completed by 16 (52%) out of 31 participants. Although the final sample of respondents was not very large, it involved representation from each of the stakeholder groups and therefore, represented a wide cross section of views. All questionnaire responses were deidentified before analysis.

Summary of documentary data sources.
Initial project discussion notes

Youth panel decisions between August and November 2020

Global Mental Health Databank (initial name of MindKind) feedback documents

Global Mental Health Databank project structure and governance

Youth panel engagement

Youth panel objectives

Steering committee notes

Agenda and meeting minutes

Presentation on project goals

Presentation on data usability group feedback and results

Global youth panel meetings

Meeting notes

Presentation

Youth advisor onboarding materials

Project governance plan

Proposal for youth involvement

Youth panel concept note

Youth advisory planning spreadsheet
Youth panel deliverable tracker
Youth advisory planning presentation Funder materials on youth mental health
Mental health priority log

Textbox 1. Summary of documentary data sources.

Data Analysis

The analysis focused on building a picture of key changes that occurred for the 4 stakeholder groups as a result of implementing youth coproduction in the MindKind study and understanding how stakeholders perceived its functioning and progress. We used a qualitative approach to collate and synthesize the collected data. Analysis took place at 2 time points: from December to February 2022 and from March to May 2022.

The second stage consisted of analyzing the MSC data to identify the MSCs identified by the 4 stakeholder groups that took place as a result of youth coproduction. This analysis was performed collaboratively by 3 researchers, 3 youth advisors, and 7 YPAG members from the United Kingdom and India, who expressed their interest in being involved in data analysis. Web-based sessions with the YPAGs were transcribed, and open-ended survey responses were summarized. These transcripts and summaries were then scrutinized for impacts on the 4 stakeholder groups, which were categorized under the impact framework [].

In the final stage of analysis, MSC data were coanalyzed by all analysts using an iterative voting approach to increase the reliability of the findings []. This involved all analysts discussing the key impacts, identifying the most impactful quotations shared by participants from each of the 4 stakeholder groups, discussing reasons for their choices, and then voting again. A preliminary version of the findings was developed and revised after discussion with advisors and YPAG members.

Outcomes of coproduction intended to take place, derived from study documents.
Outcomes at the paradigmatic level

Better conceptualization of study questions, measures, and design

Reorientating common research practices and assumptions

Outcomes at the infrastructural level

Research that values youth voices

Exploration of youth preferences and attitudes on a range of topics pertinent to data governance and mental health

Youth-informed dissemination strategies

Empowerment of young people as data users

Outcomes at the organizational level

Established communication channels between all stakeholders

Accountability mechanisms for receipt of feedback

Increased connection between youth and research institutions

Differentiated information outputs based on different information needs of stakeholders

Time and effort invested in team building to fully integrate youth

Outcomes at the group level

Engaging and authentic relationships between stakeholders, especially between youth and other stakeholders

Youth-driven rules of engagement for advisors and young people advisory group members

Outcomes at the individual level

Increased knowledge and capacity of research concepts and processes (for youth) and contexts of youth lives (for other stakeholder groups)

Adequate compensation for time and effort; networking and skill development opportunities; insights into own mental health experiences; feeling heard (for youth)

Textbox 2. Outcomes of coproduction intended to take place, derived from study documents.

Overview

A total of 31 stakeholders working across all MindKind study sites, belonging to the 4 stakeholder groups, participated in group discussions and questionnaires: 11 youths (3 advisors; 7 members across YPAGs in India, South Africa, the United Kingdom and an international YPAG; and 1 lived experience consultant at the funding organization); 11 researchers in India, South Africa, the United Kingdom, and the United States; 6 decision makers (individuals responsible for key study decisions, such as principal investigators and youth); and 3 support and administrative staff. All participants were employed in the MindKind study and had <1 to 25 years of health research experience. Where stakeholders belonged to more than 1 group, the primary group affiliation was used for the analysis (eg, a professional youth advisor could belong to the youth, researcher, and decision maker stakeholder groups). The participants were based in both high- and middle-income settings.

Paradigmatic Impact: Big-Picture Learnings for Coproduction

Paradigmatic impacts are those impacts of coproduction with the potential to modify ways of understanding and shift frames of reference []. We identified 2 paradigmatic impacts of coproduction in the MindKind study: first, coproduction enabled new and unexpected ways of conducting research, and second, coproduction modified research priorities and influenced study conceptualization and design, although this was not always successfully implemented.

With regard to the first impact of new ways of conducting research, we observed that youth advisors prompted researchers and decision makers to engage with diverse groups of youth to advise as part of YPAGs and use innovative methods to recruit study participants (eg, using Instagram stories and posts to reach young people). For YPAGs, advisors ensured that recruited members represented diverse backgrounds in research experience, ethnicity, geographic location, gender, or disability status. Previous research shows that YPAG recruitment is limited in diversity and geographic reach (eg, more advisors who are women with prior research experience, based locally) []. However, improved digital and technological flexibility in web-based coproduction enabled greater diversity.

Key impacts of youth coproduction were the introduction of Airtable, weekly youth-focused meetings, and relationship building among individual site teams. These immediate impacts then helped improve the process of coproduction by creating separate spaces for youth to share feedback, enabling practices for all stakeholders to engage with one another, and setting up multiple avenues for examining how coproduction goals were being met. Accountability mechanisms are also important for tracking the implementation of generated ideas:

We have to create spaces to explicitly solicit young people's feedback; just "having them in the room" may be too overwhelming an environment to engage.
[Researcher]

Second, coproduction with youth transformed research priorities and activities and influenced study conceptualization and design. Through coproduction, we identified points of dissonance between different stakeholder groups and used them to improve study activities, key research decisions, and research knowledge generated to align more with youth priorities, life experiences, and contexts. One example of this was to introduce more capacity building activities for advisors and YPAGs as a priority to effectively advise and participate in research implementation. Without such capacity building activities, youth stakeholders can find it difficult to provide timely and effective advice, and researchers and decision makers find it challenging to incorporate youth perspectives in research. A shared mission and common goals were important for guiding the overall direction of coproduction.

YPAG members and advisors advised on the structure and content of the MindKind app, such as preferred app engagement features, which were a core component of the quantitative study. They also reviewed and shared feedback on questions designed to be used in qualitative group discussions with the study participants. However, some of their feedback on the MindKind app could not be successfully incorporated into the app development process because of the research and funding timelines. Timing was critical, as a number of early decisions had to be made (owing to logistical and funding constraints) before the coproduction systems had been set up. This highlights the importance of timing and early engagement; otherwise, there was a risk of disengagement among youth stakeholders:

If one is going to be doing research around youth, then involve youth from the beginning right through to the end. I think MindKind didn't quite do this as we had already developed the App and the areas to focus on before we started the youth advisory groups...we did a bit of "roughshodding" and hoped they would agree with us!
[Decision maker]

Capacity building activities for youth to advise on research implementation and dissemination needed significant additional time and resources, especially from advisors and early career researchers, which were exacerbated by restricted funding timelines. These constraints meant that there were contexts in which coproduction was limited, and the study had to consider meaningful ways of course correction or acknowledge which parts of the study could not be meaningfully coproduced. However, systems for reflection in multiple teams, forums, and different groups were critical in ensuring that meaningful engagement was always possible, and attempted, even if not successful in every instance:

Many discussions around involvement have revolved around equality. However, I thought it was important to emphasise equity. This meant taking a unique approach which focused on youth capacity development and ongoing reflexivity rather than assuming involvement just meant a seat at the table.
[Youth stakeholder]

Infrastructural Impact: Constraints and Opportunities in Existing Systems

We describe infrastructural impacts of coproduction on dissemination activities, as well as infrastructural constraints within research, administrative, and funding structures that governed the larger MindKind study.

Coproduction had positive impacts on research dissemination for both formal (the MindKind final report, journal publications, and conference presentations) and informal (blog posts, seminar discussions, and internal presentations) outputs. For example, we coanalyzed and cowrote our youth coproduction publications with advisors and YPAG members, which introduced views and perspectives that might not have otherwise been incorporated. Advisors at each site (India, South Africa, and the United Kingdom) shared their views on the topics to be addressed in publications arising from the study. They also contributed to preparing an outline for each publication, participated in documentary analysis, and shared key learnings from youth involvement via blog posts. Advisors and YPAG members also coanalyzed qualitative data by assisting with theme and subtheme selection, voting on the most important findings to be highlighted, and commenting on drafts of the manuscript.

We were regularly invited to share our learnings with external research groups who had either begun or were contemplating undertaking coproduction in the form of informal discussions or extended presentations. We presented the challenges and opportunities of coproduction in posters at academic conferences, internal seminars, and university meetings (eg, within the Child and Adolescent Psychiatry research group at the Department of Psychiatry, University of Oxford). One such presentation at an internal seminar was led entirely by the advisor and YPAG members. The presence of a full-time advisor was a positive catalyst for learning in other research projects.

Factors that facilitated positive infrastructural impact included greater funding and administrative support to ensure that these tensions were addressed appropriately. Flexible timelines and the timely involvement of youth were also critical in ensuring that youth stakeholders could be fully integrated and included in the project as equal partners in research. This also meant that research funding was critical to timing, as coproduction needed resources available at the funding application stage to be done appropriately.

Infrastructural impacts varied across contexts. For example, the youth advisor and YPAG members in South Africa frequently faced planned electricity outages or "load shedding," which hampered their ability to meet via web-based portals on a regular basis. YPAG members in South Africa also did not consistently have access to the internet, and their agreed remuneration was delayed owing to wider issues with the financial administration, both of which negatively impacted their ability to engage. In contrast, advisors in India and the United Kingdom faced fewer infrastructural issues, which aided regular engagement and advice from YPAG members. These findings underscore the importance of infrastructure in a wider sense, including access to the internet and responsive administrative systems that were essential for facilitating effective coproduction.

An additional infrastructural impact within this study was that we experienced a constant tension between project timelines, deliverables, and coproduction aims. To undertake coproduction with youth fully, we needed to invest significant time and effort on capacity building activities, tailoring existing systems, and mentorship, but these were not always compatible with the study timelines. Pressure to produce reports or updates in line with project milestones were also often at odds with the time that was needed to effectively coproduce a specific aspect of the study, whether that was about the design, data collection, or analysis.

Organizational Impact: Differentiated Communication Practices and the Feedback Loop

Organizational impacts include impacts on rules, norms (culture), practices, and organizational structures []. We found that the most critical organizational impact involved changes in communication. Coproduction prompted organizations to engage appropriately with diverse stakeholder groups, including (1) ensuring that a feedback loop was in place to communicate with stakeholders, especially youth, and that this loop was closed in a way that stakeholders felt heard and (2) implementing differentiated communication practices for different stakeholders.

With regard to the feedback loop, we set up an Airtable system to record feedback from YPAG members and advisors. Research and project teams then acted on the feedback. If implementing feedback was not possible, they explained why it could not be done. Although this was an encouraging start, we found that the critical component was ensuring that feedback loops needed to be closed in a way that the youth felt they had been addressed. Data collection on Airtable also had to be made more conversational to engage with youth, so formal data collection platforms were supplemented by meetings where youth could share their feedback verbally, in addition to written feedback:

Communication must be done continuously and through multiple channels. Because everyone learns and contributes differently.
[Decision maker]

Given that effective communication meant something different for each stakeholder group, our communication practices needed different frequencies and levels of detail as well as a more inclusive information-sharing strategy to include youth. This sometimes meant that given the large number of stakeholders to consult, decisions needed more time to be taken. We implemented other changes to address these issues, for example, a weekly digest email for important announcements; quick links to project documentation; and a list of the upcoming week's meetings, including any scheduled YPAGs. Importantly, the digest was designed to ensure that everyone, including the advisors, was informed about the decisions to be made, who was making them, and when and in what format feedback would be welcomed. These digests became important tools for increasing transparency and inclusivity, directly impacting communication between stakeholders.

Group Impact and Interpersonal Relationships: Authenticity and Cycles of Engagement

Group-level impacts constitute interpersonal and stakeholder relationships within a system []. We observed that due to coproduction, authentic relationships developed between researchers and advisors and between advisors and YPAG members, and YPAG members experienced cycles of engagement and disengagement.

Authentic relationships among the advisors were aided by creating multiple channels of communication with them and among them. The advisors and study team met every week during the course of the study to discuss updates, youth integration, challenges, and learnings. The youth advisors also met each other, together with an external lived experience consultant and advisor (employed by the funder), for regular check-in meetings. They also had a monthly scheduled check-in with each other.

Advisors were responsible for leading their own YPAG and were encouraged to foster authentic relationships with the members. They met the YPAG on a fortnightly basis and conducted individual check-ins with the members to understand any concerns or feedback from them. Overall, the project team treating the advisors and YPAG members with curiosity and professionalism was helpful in fostering these relationships.

Providing the YPAG members with opportunities to upskill and spending time and resources on engagement were important in creating positive group relationships. For example, actively soliciting youth feedback, trying innovative ideas, and offering multiple avenues for youth to engage and contribute to the study beyond the role of an advisor (involvement in capacity building activities, manuscript ideation, and writing) helped increase engagement. Furthermore, closing the feedback loop in a way felt by the youth was helpful, but when this was not possible, it could lead to disengagement if not properly communicated by researchers and decision makers:

Some key things to consider when engaging and retaining youth in the MindKind Study-Providing due credit to young people where necessary and allowing them to be key decision makers who hold equal power as adult staff on the team; Providing compensation/reimbursement/honorarium for the time that youth engage with us; Providing young people with constant opportunities to upskill (through workshops, manuscript involvement, consultancies on projects aside from MindKind); Ensuring that young people are given support when needed (emotional/support with work etc.)
[Youth]

Collaboration between researchers and advisors was established over time and was beneficial to overall youth engagement. This was done through multiple channels, such as organizing check-ins between researchers and advisors, as well as directly involving advisors in all research-related activities.

Individual Impact: Better Skills, Knowledge, and Capacities

According to Beckett et al [], individual impact constitutes the characteristics of stakeholders, including biological and psychological aspects such as improved mental or physical health and improved practice and skills for practitioners. For advisors and YPAG members, major individual impacts included greater insight into one's own mental health; increased knowledge of research concepts and processes; opportunities to harness lived experiences of mental health challenges; remuneration for time and skills; and new academic, presentation, and study skills. The advisors and YPAG members reported developing better insights into their own mental health by participating in project activities and having discussions about a future global mental health databank. Furthermore, they reported increased skills and knowledge development in research-related concepts:

One of the most significant changes for me is probably the importance of research and studies which, which I mean, are now involved in but just in general, for the understanding of mental health...it's helped me look at mental health as more collective thing, rather than being more focused on the individual just because, like we, we convene, we talk on a weekly basis, but also the moving parts and the systems which have to be in place for some sort of change to happen. And some sort of, like, insight into mental health and research to actually come to fruition.
[Youth]

These impacts were mediated by the following factors: having site-specific and international YPAGs led by advisors, capacity building activities for advisors to independently coordinate and lead several study components, regular capacity building activities for YPAG members to advise on study, and dedicated spaces for youth to interact with each other. These capacity building activities involved dedicating sessions to demonstrate research in practice. Customized support for advisors to suit their backgrounds and interests was also critical for enhancing outcomes:

Young people's social and cultural contexts affect their knowledge and opinions on mental health. While this was something that I had some idea about prior to the study, having regular conversations with advisors and researchers across the sites led to interesting learnings on how social and cultural contexts play a role in shaping a young person's perspective and knowledge on mental health (for example, what mental health means to a young person in a HIC [high-income country] vs what it means to a young person in an LMIC [low- and middle-income country]).
[Youth]

For researchers and decision makers, enhanced coproduction with youth resulted in a much richer understanding of young people's life experiences and contexts:

I think we learned a lot about how youth wanted to be engaged...the decision making on the side of the research team needed to happen at a much faster pace than the youth were comfortable (or able) to make decisions. As a result, we sometimes just "told" rather than "asked." I think the youth forced us to slow down and demanded inclusion, which was a very powerful change to the study.
[Decision maker]

This was aided by ongoing reflexivity by the research team and decision makers as well as course correction based on youth feedback.

Summary of Findings

Our findings suggest that coproduction with youth in the MindKind study had significant positive impacts for all stakeholder groups (youth, researchers, decision makers, and administrative and support staff). In addition, having a web-based YPAG allowed engagement from a diverse group of panel members, facilitating wider reach and convenience by conducting sessions at suitable times. We found that coproduction impacted, to varying degrees, all 5 domains of practice: paradigms (new or innovative ways of doing research and influence on research priorities, conceptualization, and design), infrastructure (improved dissemination of learning and constant tensions between study timelines and coproduction owing to infrastructural stressors), organizational (differentiated communication needs, practices, and outputs; greater emphasis on closing the feedback loop; and better access between youth and research institutions), group (more authentic relationships among youth and between youth and other stakeholders, and ebbs and flows in engagement), and individual (increased skills and capacities for all, opportunity to use lived experience of mental health for youth, and increased knowledge of youth life experiences for researchers and decision makers). Some impacts, such as societal or infrastructural impacts, occurring beyond the project can be challenging to measure and document but cannot be ignored.

Implications and Recommendations

Youth coproduction generally led to better outcomes overall, not only for youth but also for researchers, decision makers, administrative staff, and the research as a whole. Individual- and group-level impacts included increased knowledge, skills, and capacities for youth and other stakeholders; youth being able to use their lived experience of mental health and feeling heard; authentic relationships between the YPAG and advisors; and ebbs and flows in engagement over the project life cycle. Many of these findings align with the wider literature on the impact of coproduction with youth [,,]. Having a dedicated youth advisor in each site was critical in achieving these impacts. There was no full-time youth advisor in the US study team (ie, not a study site, but the coordination hub); if present, this might have resulted in improved communication and greater youth input into some of the technological decisions.

Coproduction with youth consistently challenged nonyouth stakeholders on their assumptions of what the research could look like. This aligns with the wider literature, which emphasizes that the involvement of stakeholders in research is linked with greater effectiveness, if there is articulation of a shared mission and goals []. Our findings further confirm that although a shared mission is critical, establishing clear expectations with funders and organizations in terms of the practical costs of undertaking coproduction and implementing necessary changes in organizational communication practices are critical in achieving better outcomes for all.

Our experience of coproduction with youth as an active process of valuing all types of knowledge and experiences and creating a balance between different stakeholders aligns with others' experiences []. However, we encountered several barriers in implementing coproduction with youth according to its tenets and in line with our shared mission []. Our systems for reflection and discussion were critical in addressing these barriers effectively, which is a characteristic of effective partnerships []. Our findings point to the need for ongoing monitoring and evaluation of impact and to ensure that this is set up as early as practicable in the research cycle. Such monitoring and evaluation should take the form of first articulating outcomes and measurable indicators of what coproduction is meant to achieve, for whom, and by when. Establishing feedback forms and recurring surveys that capture periodic progress toward these goals is a good starting point.

The relatively recent completion of the study limits attempts to describe the wider infrastructural or societal impact as intended in the framework by Beckett et al []. Instead, we discuss modest impacts on dissemination and infrastructural constraints while undertaking coproduction with youth. However, to determine the wider infrastructural impact of youth involvement at the societal level, coproduction with youth would need to be assessed at the national scale, where such methods are adopted to measure its public value. Our experiences broadly map the practical costs and challenges of coproduction, such as large administrative burdens, increased researcher time and resources, the lack of training on the implementation of coproduction, and insufficient funds and resources to effectively undertake coproduced research []. Although we found significant benefits of undertaking coproduction, we also found that grappling with timelines and costs could lead to a diluted version of coproduction to coproduction lite. Despite the focus and funding support, our experience highlights the entrenched structural challenges in undertaking coproduced scientific research more broadly []. Our findings highlight the need to cocreate the infrastructure needed to undertake coproduction, resource it appropriately, and recognize the time and skills needed to coproduce research [].

Youth Involvement

We were committed to ensuring the meaningful involvement of young people, but funding and timeline constraints meant that such involvement needed to be proportional and pragmatic. Therefore, we involved YPAG members in areas where they had particular knowledge, interests, or skills, specifically data collection, analysis, and the interpretation of findings. We analyzed the data in collaboration with advisors and YPAG members who were interested in doing so and jointly interpreted the findings and decided on specific findings to be presented in the paper. In relation to dissemination, we also met YPAG members and advisors who had participated in data analysis and interpretation to understand how they would like to be acknowledged in the paper (in this study, as coauthors).

Conclusions

Although the resources involved in coproduction are significant, they yield several benefits for various stakeholder groups and across several domains. We have attempted to capture these impacts and their enabling or disabling factors in further detail in the context of the MindKind study, which focused on young people's views of mental health data governance in India, South Africa, and the United Kingdom. We found that "effective coproduction emerges in practice" [], and numerous opportunities and challenges arise in the implementation of coproduction.

Acknowledgments

The authors would like to thank all members of the MindKind Youth Group Advisory Panels in India, South Africa, and the United Kingdom; the International Youth Panel; and the Global Youth Panel for their thoughtful and generous contributions to this project.

The MindKind Consortium includes the following members: Faith Oluwasemilore Adeyemi, Patricia A Areán, Emily Bampton, Elin A Björling, Ljubomir Bradic, Anne-Marie Burn, Emma Grace Carey, Sonia P Carlson, Pamela Y Collins, Tessa Concepcion, Meera Damji, Megan Doerr, Julia C Dunbar, Mina Fazel, Blossom Fernandes, Gillian Finchilescu, Tamsin Jane Ford, Melvyn Freeman, Isabell R Griffith Fillipo, Jay Hodgson, Jasmine Kalha, Minal Karani, Michael R Kellen, Christopher G Kemp, Simthembile Lindani, Lara M Mangravite, Carly Marten, Hedwick Masomera, Felicia Mata-Greve, Emily Moore, Erin Mounts, Lakshmi Neelakantan, Larsson Omberg, Lisa Pasquale, Soumitra Pathare, Swetha Ranganathan, Nichole Sams, Erin Joy Scanlan, Himani Shah, Sotirios Short, Refiloe Sibisi, Solveig K Sieberts, Stockard Simon, Sushmita Sumant, Christine Suver, Yanga Thungana, Meghasyam Tummalacherla, Chandre Van Vught, Jennifer Velloza and Zukiswa Zingela.

Conflicts of Interest

None declared.

Multimedia Appendix 1

Impact, processes, and mechanisms of coproduction with youth in the MindKind study.
DOCX File , 30 KB

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GRIPP: Guidance for Reporting Involvement of Patients and the Public

MSC: Most Significant Change

YPAG: young people's advisory group

Edited by Y Khader; submitted 26.09.22; peer-reviewed by E Rozendaal, S Acquilano; comments to author 17.02.23; revised version received 09.04.23; accepted 14.04.23; published 19.06.23

©Blossom Fernandes, Lakshmi Neelakantan, Himani Shah, Sushmita Sumant, Pamela Y Collins, Jennifer Velloza, Emily Bampton, Swetha Ranganathan, Refiloe Sibisi, Toiba Bashir, Joshua Bowes, Esther Larisa David, Harsimar Kaur, Umairah Malik, Issy Shannon, Suvlaxmi Gurumayum, Anne-Marie Burn, Solveig K Sieberts, The MindKind Consortium, Mina Fazel. Originally published in JMIR Public Health and Surveillance (https://publichealth.jmir.org), 19.06.2023.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Public Health and Surveillance, is properly cited. The complete bibliographic information, a link to the original publication on https://publichealth.jmir.org, as well as this copyright and license information must be included.

Background: Public involvement in research is a growing phenomenon as well as a condition of research funding, and it is often referred to as coproduction. Coproduction involves stakeholder contributions at every stage of research, but different processes exist. However, the impact of coproduction on research is not well understood. Web-based young people's advisory groups (YPAGs) were established as part of the MindKind study at 3 sites (India, South Africa, and the United Kingdom) to coproduce the wider research study. Each group site, led by a professional youth advisor, conducted all youth coproduction activities collaboratively with other research staff.

Objective: This study aimed to evaluate the impact of youth coproduction in the MindKind study.

Methods: To measure the impact of web-based youth coproduction on all stakeholders, the following methods were used: analysis of project documents, capturing the views of stakeholders using the Most Significant Change technique, and impact frameworks to assess the impact of youth coproduction on specific stakeholder outcomes. Data were analyzed in collaboration with researchers, advisors, and YPAG members to explore the impact of youth coproduction on research.

Results: The impact was recorded on 5 levels. First, at the paradigmatic level, a novel method of conducting research allowed for a widely diverse group of YPAG representations, influencing study priorities, conceptualization, and design. Second, at the infrastructural level, the YPAG and youth advisors meaningfully contributed to the dissemination of materials; infrastructural constraints of undertaking coproduction were also identified. Third, at the organizational level, coproduction necessitated implementing new communication practices, such as a web-based shared platform. This meant that materials were easily accessible to the whole team and communication streams remained consistent. Fourth, at the group level, authentic relationships developed between the YPAG members, advisors, and the rest of the team, facilitated by regular web-based contact. Finally, at the individual level, participants reported enhanced insights into mental well-being and appreciation for the opportunity to engage in research.

Conclusions: This study revealed several factors that shape the creation of web-based coproduction, with clear positive outcomes for advisors, YPAG members, researchers, and other project staff. However, several challenges of coproduced research were also encountered in multiple contexts and amid pressing timelines. For systematic reporting of the impact of youth coproduction, we propose that monitoring, evaluation, and learning systems be designed and implemented early.

JMIR Public Health Surveill 2023;9:e42963

doi:10.2196/42963

Keywords

Background

Increasingly, participatory and collaborative research methods have been used to reduce the gap between evidence and implementation [-]. One way to do this is to involve target groups in research, using coproduction processes, particularly the involvement of youth, to reflect their needs in research [,]. Coproduction is "an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge" []. Coproduction aims to ensure that the knowledge generated is informed by the needs of the target group, is relevant to them, and has greater applicative value in their local setting []. This is somewhat different from what Baum et al [] describe as participatory action research, where participants are involved in a reflective manner, by collecting and analyzing the data and then determining the outcome. Thus, the active involvement of knowledge users (eg, young people with mental health difficulties) in research, who are experts in their experience, aims to enhance the quality and utility of research.

Coproduction in Mental Health Research With Youth

Different forms of mental health researcher and knowledge user partnerships have grown in popularity, primarily in high-income settings, particularly among young people []. With most lifelong mental health conditions having an onset by the mid-20s [], there is a vital focus on better understanding youth mental health needs and curating services tailored to their needs. Several benefits of such youth-researcher collaborations have been identified. For example, coproduction with youth increases the relevance of research aims [] and facilitation of recruitment [,] and helps the production of richer and more reliable data []. Researcher-intensive tasks such as data analysis, the presentation of findings, and dissemination also benefit from youth involvement []. Coproduction also enables incorporating lived experiences effectively; with regard to user outcomes, coproduction helps young people develop transferable skills [,] and research skills [] and to understand their own mental health better [].

Complexities and Challenges of Undertaking Coproduction With Young People

Though coproduction of knowledge may seem like an elegant solution to ensure the implementation of evidence-based practices, it is a highly complex, context-specific experimental process that is often time-consuming and resource intensive []. Effective coproduction requires collaborative effort at every stage of the research process []. The environment is important, as are researcher traits, such as openness, tolerance, and flexibility [], and organizational qualities, such as building trustworthy relationships and innovative methodologies [,].

The complex process of coproduction with youth comes with specific challenges, as complicated power dynamics may need to be identified, acknowledged, and addressed. Researchers may need to address youth-adult hierarchies [], which may disrupt effective collaborative work. If such traditional patterns are not disrupted, tokenism, difficulties in conflict resolution and shared decision-making between youth and researchers can ensue []. Research processes that ensure coproduction with youth require additional time and resources owing to a number of cultural, ethical, and safety considerations, such as assent-consent procedures for legal minors [] and ensuring safe practices while also recognizing their agency [].

Measuring the Impact of Coproduction

Few studies report the impacts of youth coproduction [], complex processes of collaboration, and nonlinear impacts for stakeholders []. The MindKind study used mixed methods to elicit young people's views on data governance and to assess the feasibility of setting up a user-controlled global mental health databank []. This study was conducted in India, South Africa, and the United Kingdom. Participants aged 18 to 24 years (16 to 24 years in the United Kingdom) were enrolled on a separate website and randomized into 1 of the 4 data governance options []. Using an app designed for the study, participants were invited to share data on key active ingredients of mental health, such as sleep, body movement, social connections, and positive experiences over a 12-week period. Study participants in the qualitative arm took part in country-specific and multinational group deliberative democracy sessions [] focused on building a consensus pertaining to the governance of a future mental health databank. Each arm of the study had a strong focus on coproduction.

We note that the findings discussed in this manuscript do not include any data from the main MindKind study or any of the randomized arms. The objective of this manuscript was to describe the impact of coproduction with youth on different stakeholder groups []. Coproduction with youth was designed to influence both the qualitative and quantitative study arms (ie, youth were coresearchers), and we evaluated such impact of youth acting as coresearchers on key stakeholder groups. Advisors in the project did not participate in the qualitative or quantitative study conducted as part of the MindKind study.

Ethics Approval

Ethics approval for the MindKind study was obtained from each of the country sites, namely the United States (WIRB #20212067), the United Kingdom (University of Cambridge, Department of Psychology Research Ethics Committee: Ref. PRE.2021.031 and University of Oxford: Ref R73366/RE00), South Africa (Walter Sisulu University #029/2021 and the Department of Higher Education and Training), and India (India Law Society #ILS/242/2021 and Health Ministry Screening Committee).

Overview of Youth Coproduction

Each MindKind study site employed a full-time youth lead or professional youth advisor (youth advisor), to convene and run a YPAG in each country site (India, South Africa, and the United Kingdom) and advise on all aspects of the study. The youth advisor was a young person aged 18-23 years who had lived experience of mental health challenges. The in-country YPAGs in each site comprised of young people with lived experience of mental health challenges aged 18-24 years (16-24 years in the United Kingdom), known as YPAG members. In addition to the in-country YPAGs, around 3 to 4 YPAG members from each site joined an international YPAG to advise on broader study questions.

Each youth advisor had 1 vote on the study's Steering Committee and, therefore, actively participated in study decision-making. Sessions conducted with the in-country and international YPAGs were planned collaboratively by the research teams and led by the respective youth advisors. Sessions were recorded, and feedback shared by the YPAGs was reported by the youth advisors to the research teams via a web-based platform called Airtable. Researchers were then required to respond in Airtable to clarify whether the feedback had been actioned, and if not, why. Youth involvement in MindKind is described in .

‎
Figure 1. Youth involvement in the MindKind study.

Data Sources

Coproduction with youth occurred during the study period between September 2020 and July 2022. Data collection to evaluate the impact of coproduction was conducted sequentially in 2 stages with 4 sets of stakeholder groups: youth (advisors and YPAG members), researchers (staff who contributed to research design, data collection, and analysis), decision makers (principal investigators and funders), and support and administrative staff (defined broadly to include anyone who undertook substantial administrative and support responsibilities as part of their role).

First, we collated various project documents generated between September 2020 and January 2022, such as meeting recordings and minutes, project descriptions, and work plans, to determine the coproduction outcomes relevant to all stakeholder groups (youth, researchers, decision makers, and administrative staff). A total of 17 documents were downloaded from the project database for analysis. A summary of these data sources is presented in . The outcomes identified at this stage allowed us to refine subsequent data collection on significant changes for the 4 stakeholder groups.

Second, building on the identified outcomes, we generated data based on the Most Significant Change (MSC) technique on the main changes that resulted from coproduction with youth for the 4 stakeholder groups, that is, moving from the outcomes that were intended to take place to the impacts that actually took place []. This technique involved gathering stories of the MSCs from stakeholders via open questions to distill key learning about the study and recommendations for the future. In this study, MSC technique meant gathering views from the 4 stakeholder groups on what had changed or had been impacted as a result of youth coproduction. Researchers and youth advisors implemented the MSC technique via web-based in-depth group discussions with in-country and international YPAGs. In these group discussions with YPAG members, the youth advisor in that study site and the lead authors gathered youth views on what impacts they felt had taken place as a result of youth coproduction.

For other stakeholders (ie, researchers, decision makers, and administrative staff), an open-ended web-based questionnaire solicited views on significant changes across 4 to 5 specified outcomes for each stakeholder group. This web-based questionnaire was emailed to all stakeholders in the study and completed by 16 (52%) out of 31 participants. Although the final sample of respondents was not very large, it involved representation from each of the stakeholder groups and therefore, represented a wide cross section of views. All questionnaire responses were deidentified before analysis.

Summary of documentary data sources.
Initial project discussion notes

Youth panel decisions between August and November 2020

Global Mental Health Databank (initial name of MindKind) feedback documents

Global Mental Health Databank project structure and governance

Youth panel engagement

Youth panel objectives

Steering committee notes

Agenda and meeting minutes

Presentation on project goals

Presentation on data usability group feedback and results

Global youth panel meetings

Meeting notes

Presentation

Youth advisor onboarding materials

Project governance plan

Proposal for youth involvement

Youth panel concept note

Youth advisory planning spreadsheet
Youth panel deliverable tracker
Youth advisory planning presentation Funder materials on youth mental health
Mental health priority log

Textbox 1. Summary of documentary data sources.

Data Analysis

The analysis focused on building a picture of key changes that occurred for the 4 stakeholder groups as a result of implementing youth coproduction in the MindKind study and understanding how stakeholders perceived its functioning and progress. We used a qualitative approach to collate and synthesize the collected data. Analysis took place at 2 time points: from December to February 2022 and from March to May 2022.

The second stage consisted of analyzing the MSC data to identify the MSCs identified by the 4 stakeholder groups that took place as a result of youth coproduction. This analysis was performed collaboratively by 3 researchers, 3 youth advisors, and 7 YPAG members from the United Kingdom and India, who expressed their interest in being involved in data analysis. Web-based sessions with the YPAGs were transcribed, and open-ended survey responses were summarized. These transcripts and summaries were then scrutinized for impacts on the 4 stakeholder groups, which were categorized under the impact framework [].

In the final stage of analysis, MSC data were coanalyzed by all analysts using an iterative voting approach to increase the reliability of the findings []. This involved all analysts discussing the key impacts, identifying the most impactful quotations shared by participants from each of the 4 stakeholder groups, discussing reasons for their choices, and then voting again. A preliminary version of the findings was developed and revised after discussion with advisors and YPAG members.

Outcomes of coproduction intended to take place, derived from study documents.
Outcomes at the paradigmatic level

Better conceptualization of study questions, measures, and design

Reorientating common research practices and assumptions

Outcomes at the infrastructural level

Research that values youth voices

Exploration of youth preferences and attitudes on a range of topics pertinent to data governance and mental health

Youth-informed dissemination strategies

Empowerment of young people as data users

Outcomes at the organizational level

Established communication channels between all stakeholders

Accountability mechanisms for receipt of feedback

Increased connection between youth and research institutions

Differentiated information outputs based on different information needs of stakeholders

Time and effort invested in team building to fully integrate youth

Outcomes at the group level

Engaging and authentic relationships between stakeholders, especially between youth and other stakeholders

Youth-driven rules of engagement for advisors and young people advisory group members

Outcomes at the individual level

Increased knowledge and capacity of research concepts and processes (for youth) and contexts of youth lives (for other stakeholder groups)

Adequate compensation for time and effort; networking and skill development opportunities; insights into own mental health experiences; feeling heard (for youth)

Textbox 2. Outcomes of coproduction intended to take place, derived from study documents.

Overview

A total of 31 stakeholders working across all MindKind study sites, belonging to the 4 stakeholder groups, participated in group discussions and questionnaires: 11 youths (3 advisors; 7 members across YPAGs in India, South Africa, the United Kingdom and an international YPAG; and 1 lived experience consultant at the funding organization); 11 researchers in India, South Africa, the United Kingdom, and the United States; 6 decision makers (individuals responsible for key study decisions, such as principal investigators and youth); and 3 support and administrative staff. All participants were employed in the MindKind study and had <1 to 25 years of health research experience. Where stakeholders belonged to more than 1 group, the primary group affiliation was used for the analysis (eg, a professional youth advisor could belong to the youth, researcher, and decision maker stakeholder groups). The participants were based in both high- and middle-income settings.

Paradigmatic Impact: Big-Picture Learnings for Coproduction

Paradigmatic impacts are those impacts of coproduction with the potential to modify ways of understanding and shift frames of reference []. We identified 2 paradigmatic impacts of coproduction in the MindKind study: first, coproduction enabled new and unexpected ways of conducting research, and second, coproduction modified research priorities and influenced study conceptualization and design, although this was not always successfully implemented.

With regard to the first impact of new ways of conducting research, we observed that youth advisors prompted researchers and decision makers to engage with diverse groups of youth to advise as part of YPAGs and use innovative methods to recruit study participants (eg, using Instagram stories and posts to reach young people). For YPAGs, advisors ensured that recruited members represented diverse backgrounds in research experience, ethnicity, geographic location, gender, or disability status. Previous research shows that YPAG recruitment is limited in diversity and geographic reach (eg, more advisors who are women with prior research experience, based locally) []. However, improved digital and technological flexibility in web-based coproduction enabled greater diversity.

Key impacts of youth coproduction were the introduction of Airtable, weekly youth-focused meetings, and relationship building among individual site teams. These immediate impacts then helped improve the process of coproduction by creating separate spaces for youth to share feedback, enabling practices for all stakeholders to engage with one another, and setting up multiple avenues for examining how coproduction goals were being met. Accountability mechanisms are also important for tracking the implementation of generated ideas:

We have to create spaces to explicitly solicit young people's feedback; just "having them in the room" may be too overwhelming an environment to engage.
[Researcher]

Second, coproduction with youth transformed research priorities and activities and influenced study conceptualization and design. Through coproduction, we identified points of dissonance between different stakeholder groups and used them to improve study activities, key research decisions, and research knowledge generated to align more with youth priorities, life experiences, and contexts. One example of this was to introduce more capacity building activities for advisors and YPAGs as a priority to effectively advise and participate in research implementation. Without such capacity building activities, youth stakeholders can find it difficult to provide timely and effective advice, and researchers and decision makers find it challenging to incorporate youth perspectives in research. A shared mission and common goals were important for guiding the overall direction of coproduction.

YPAG members and advisors advised on the structure and content of the MindKind app, such as preferred app engagement features, which were a core component of the quantitative study. They also reviewed and shared feedback on questions designed to be used in qualitative group discussions with the study participants. However, some of their feedback on the MindKind app could not be successfully incorporated into the app development process because of the research and funding timelines. Timing was critical, as a number of early decisions had to be made (owing to logistical and funding constraints) before the coproduction systems had been set up. This highlights the importance of timing and early engagement; otherwise, there was a risk of disengagement among youth stakeholders:

If one is going to be doing research around youth, then involve youth from the beginning right through to the end. I think MindKind didn't quite do this as we had already developed the App and the areas to focus on before we started the youth advisory groups...we did a bit of "roughshodding" and hoped they would agree with us!
[Decision maker]

Capacity building activities for youth to advise on research implementation and dissemination needed significant additional time and resources, especially from advisors and early career researchers, which were exacerbated by restricted funding timelines. These constraints meant that there were contexts in which coproduction was limited, and the study had to consider meaningful ways of course correction or acknowledge which parts of the study could not be meaningfully coproduced. However, systems for reflection in multiple teams, forums, and different groups were critical in ensuring that meaningful engagement was always possible, and attempted, even if not successful in every instance:

Many discussions around involvement have revolved around equality. However, I thought it was important to emphasise equity. This meant taking a unique approach which focused on youth capacity development and ongoing reflexivity rather than assuming involvement just meant a seat at the table.
[Youth stakeholder]

Infrastructural Impact: Constraints and Opportunities in Existing Systems

We describe infrastructural impacts of coproduction on dissemination activities, as well as infrastructural constraints within research, administrative, and funding structures that governed the larger MindKind study.

Coproduction had positive impacts on research dissemination for both formal (the MindKind final report, journal publications, and conference presentations) and informal (blog posts, seminar discussions, and internal presentations) outputs. For example, we coanalyzed and cowrote our youth coproduction publications with advisors and YPAG members, which introduced views and perspectives that might not have otherwise been incorporated. Advisors at each site (India, South Africa, and the United Kingdom) shared their views on the topics to be addressed in publications arising from the study. They also contributed to preparing an outline for each publication, participated in documentary analysis, and shared key learnings from youth involvement via blog posts. Advisors and YPAG members also coanalyzed qualitative data by assisting with theme and subtheme selection, voting on the most important findings to be highlighted, and commenting on drafts of the manuscript.

We were regularly invited to share our learnings with external research groups who had either begun or were contemplating undertaking coproduction in the form of informal discussions or extended presentations. We presented the challenges and opportunities of coproduction in posters at academic conferences, internal seminars, and university meetings (eg, within the Child and Adolescent Psychiatry research group at the Department of Psychiatry, University of Oxford). One such presentation at an internal seminar was led entirely by the advisor and YPAG members. The presence of a full-time advisor was a positive catalyst for learning in other research projects.

Factors that facilitated positive infrastructural impact included greater funding and administrative support to ensure that these tensions were addressed appropriately. Flexible timelines and the timely involvement of youth were also critical in ensuring that youth stakeholders could be fully integrated and included in the project as equal partners in research. This also meant that research funding was critical to timing, as coproduction needed resources available at the funding application stage to be done appropriately.

Infrastructural impacts varied across contexts. For example, the youth advisor and YPAG members in South Africa frequently faced planned electricity outages or "load shedding," which hampered their ability to meet via web-based portals on a regular basis. YPAG members in South Africa also did not consistently have access to the internet, and their agreed remuneration was delayed owing to wider issues with the financial administration, both of which negatively impacted their ability to engage. In contrast, advisors in India and the United Kingdom faced fewer infrastructural issues, which aided regular engagement and advice from YPAG members. These findings underscore the importance of infrastructure in a wider sense, including access to the internet and responsive administrative systems that were essential for facilitating effective coproduction.

An additional infrastructural impact within this study was that we experienced a constant tension between project timelines, deliverables, and coproduction aims. To undertake coproduction with youth fully, we needed to invest significant time and effort on capacity building activities, tailoring existing systems, and mentorship, but these were not always compatible with the study timelines. Pressure to produce reports or updates in line with project milestones were also often at odds with the time that was needed to effectively coproduce a specific aspect of the study, whether that was about the design, data collection, or analysis.

Organizational Impact: Differentiated Communication Practices and the Feedback Loop

Organizational impacts include impacts on rules, norms (culture), practices, and organizational structures []. We found that the most critical organizational impact involved changes in communication. Coproduction prompted organizations to engage appropriately with diverse stakeholder groups, including (1) ensuring that a feedback loop was in place to communicate with stakeholders, especially youth, and that this loop was closed in a way that stakeholders felt heard and (2) implementing differentiated communication practices for different stakeholders.

With regard to the feedback loop, we set up an Airtable system to record feedback from YPAG members and advisors. Research and project teams then acted on the feedback. If implementing feedback was not possible, they explained why it could not be done. Although this was an encouraging start, we found that the critical component was ensuring that feedback loops needed to be closed in a way that the youth felt they had been addressed. Data collection on Airtable also had to be made more conversational to engage with youth, so formal data collection platforms were supplemented by meetings where youth could share their feedback verbally, in addition to written feedback:

Communication must be done continuously and through multiple channels. Because everyone learns and contributes differently.
[Decision maker]

Given that effective communication meant something different for each stakeholder group, our communication practices needed different frequencies and levels of detail as well as a more inclusive information-sharing strategy to include youth. This sometimes meant that given the large number of stakeholders to consult, decisions needed more time to be taken. We implemented other changes to address these issues, for example, a weekly digest email for important announcements; quick links to project documentation; and a list of the upcoming week's meetings, including any scheduled YPAGs. Importantly, the digest was designed to ensure that everyone, including the advisors, was informed about the decisions to be made, who was making them, and when and in what format feedback would be welcomed. These digests became important tools for increasing transparency and inclusivity, directly impacting communication between stakeholders.

Group Impact and Interpersonal Relationships: Authenticity and Cycles of Engagement

Group-level impacts constitute interpersonal and stakeholder relationships within a system []. We observed that due to coproduction, authentic relationships developed between researchers and advisors and between advisors and YPAG members, and YPAG members experienced cycles of engagement and disengagement.

Authentic relationships among the advisors were aided by creating multiple channels of communication with them and among them. The advisors and study team met every week during the course of the study to discuss updates, youth integration, challenges, and learnings. The youth advisors also met each other, together with an external lived experience consultant and advisor (employed by the funder), for regular check-in meetings. They also had a monthly scheduled check-in with each other.

Advisors were responsible for leading their own YPAG and were encouraged to foster authentic relationships with the members. They met the YPAG on a fortnightly basis and conducted individual check-ins with the members to understand any concerns or feedback from them. Overall, the project team treating the advisors and YPAG members with curiosity and professionalism was helpful in fostering these relationships.

Providing the YPAG members with opportunities to upskill and spending time and resources on engagement were important in creating positive group relationships. For example, actively soliciting youth feedback, trying innovative ideas, and offering multiple avenues for youth to engage and contribute to the study beyond the role of an advisor (involvement in capacity building activities, manuscript ideation, and writing) helped increase engagement. Furthermore, closing the feedback loop in a way felt by the youth was helpful, but when this was not possible, it could lead to disengagement if not properly communicated by researchers and decision makers:

Some key things to consider when engaging and retaining youth in the MindKind Study-Providing due credit to young people where necessary and allowing them to be key decision makers who hold equal power as adult staff on the team; Providing compensation/reimbursement/honorarium for the time that youth engage with us; Providing young people with constant opportunities to upskill (through workshops, manuscript involvement, consultancies on projects aside from MindKind); Ensuring that young people are given support when needed (emotional/support with work etc.)
[Youth]

Collaboration between researchers and advisors was established over time and was beneficial to overall youth engagement. This was done through multiple channels, such as organizing check-ins between researchers and advisors, as well as directly involving advisors in all research-related activities.

Individual Impact: Better Skills, Knowledge, and Capacities

According to Beckett et al [], individual impact constitutes the characteristics of stakeholders, including biological and psychological aspects such as improved mental or physical health and improved practice and skills for practitioners. For advisors and YPAG members, major individual impacts included greater insight into one's own mental health; increased knowledge of research concepts and processes; opportunities to harness lived experiences of mental health challenges; remuneration for time and skills; and new academic, presentation, and study skills. The advisors and YPAG members reported developing better insights into their own mental health by participating in project activities and having discussions about a future global mental health databank. Furthermore, they reported increased skills and knowledge development in research-related concepts:

One of the most significant changes for me is probably the importance of research and studies which, which I mean, are now involved in but just in general, for the understanding of mental health...it's helped me look at mental health as more collective thing, rather than being more focused on the individual just because, like we, we convene, we talk on a weekly basis, but also the moving parts and the systems which have to be in place for some sort of change to happen. And some sort of, like, insight into mental health and research to actually come to fruition.
[Youth]

These impacts were mediated by the following factors: having site-specific and international YPAGs led by advisors, capacity building activities for advisors to independently coordinate and lead several study components, regular capacity building activities for YPAG members to advise on study, and dedicated spaces for youth to interact with each other. These capacity building activities involved dedicating sessions to demonstrate research in practice. Customized support for advisors to suit their backgrounds and interests was also critical for enhancing outcomes:

Young people's social and cultural contexts affect their knowledge and opinions on mental health. While this was something that I had some idea about prior to the study, having regular conversations with advisors and researchers across the sites led to interesting learnings on how social and cultural contexts play a role in shaping a young person's perspective and knowledge on mental health (for example, what mental health means to a young person in a HIC [high-income country] vs what it means to a young person in an LMIC [low- and middle-income country]).
[Youth]

For researchers and decision makers, enhanced coproduction with youth resulted in a much richer understanding of young people's life experiences and contexts:

I think we learned a lot about how youth wanted to be engaged...the decision making on the side of the research team needed to happen at a much faster pace than the youth were comfortable (or able) to make decisions. As a result, we sometimes just "told" rather than "asked." I think the youth forced us to slow down and demanded inclusion, which was a very powerful change to the study.
[Decision maker]

This was aided by ongoing reflexivity by the research team and decision makers as well as course correction based on youth feedback.

Summary of Findings

Our findings suggest that coproduction with youth in the MindKind study had significant positive impacts for all stakeholder groups (youth, researchers, decision makers, and administrative and support staff). In addition, having a web-based YPAG allowed engagement from a diverse group of panel members, facilitating wider reach and convenience by conducting sessions at suitable times. We found that coproduction impacted, to varying degrees, all 5 domains of practice: paradigms (new or innovative ways of doing research and influence on research priorities, conceptualization, and design), infrastructure (improved dissemination of learning and constant tensions between study timelines and coproduction owing to infrastructural stressors), organizational (differentiated communication needs, practices, and outputs; greater emphasis on closing the feedback loop; and better access between youth and research institutions), group (more authentic relationships among youth and between youth and other stakeholders, and ebbs and flows in engagement), and individual (increased skills and capacities for all, opportunity to use lived experience of mental health for youth, and increased knowledge of youth life experiences for researchers and decision makers). Some impacts, such as societal or infrastructural impacts, occurring beyond the project can be challenging to measure and document but cannot be ignored.

Implications and Recommendations

Youth coproduction generally led to better outcomes overall, not only for youth but also for researchers, decision makers, administrative staff, and the research as a whole. Individual- and group-level impacts included increased knowledge, skills, and capacities for youth and other stakeholders; youth being able to use their lived experience of mental health and feeling heard; authentic relationships between the YPAG and advisors; and ebbs and flows in engagement over the project life cycle. Many of these findings align with the wider literature on the impact of coproduction with youth [,,]. Having a dedicated youth advisor in each site was critical in achieving these impacts. There was no full-time youth advisor in the US study team (ie, not a study site, but the coordination hub); if present, this might have resulted in improved communication and greater youth input into some of the technological decisions.

Coproduction with youth consistently challenged nonyouth stakeholders on their assumptions of what the research could look like. This aligns with the wider literature, which emphasizes that the involvement of stakeholders in research is linked with greater effectiveness, if there is articulation of a shared mission and goals []. Our findings further confirm that although a shared mission is critical, establishing clear expectations with funders and organizations in terms of the practical costs of undertaking coproduction and implementing necessary changes in organizational communication practices are critical in achieving better outcomes for all.

Our experience of coproduction with youth as an active process of valuing all types of knowledge and experiences and creating a balance between different stakeholders aligns with others' experiences []. However, we encountered several barriers in implementing coproduction with youth according to its tenets and in line with our shared mission []. Our systems for reflection and discussion were critical in addressing these barriers effectively, which is a characteristic of effective partnerships []. Our findings point to the need for ongoing monitoring and evaluation of impact and to ensure that this is set up as early as practicable in the research cycle. Such monitoring and evaluation should take the form of first articulating outcomes and measurable indicators of what coproduction is meant to achieve, for whom, and by when. Establishing feedback forms and recurring surveys that capture periodic progress toward these goals is a good starting point.

The relatively recent completion of the study limits attempts to describe the wider infrastructural or societal impact as intended in the framework by Beckett et al []. Instead, we discuss modest impacts on dissemination and infrastructural constraints while undertaking coproduction with youth. However, to determine the wider infrastructural impact of youth involvement at the societal level, coproduction with youth would need to be assessed at the national scale, where such methods are adopted to measure its public value. Our experiences broadly map the practical costs and challenges of coproduction, such as large administrative burdens, increased researcher time and resources, the lack of training on the implementation of coproduction, and insufficient funds and resources to effectively undertake coproduced research []. Although we found significant benefits of undertaking coproduction, we also found that grappling with timelines and costs could lead to a diluted version of coproduction to coproduction lite. Despite the focus and funding support, our experience highlights the entrenched structural challenges in undertaking coproduced scientific research more broadly []. Our findings highlight the need to cocreate the infrastructure needed to undertake coproduction, resource it appropriately, and recognize the time and skills needed to coproduce research [].

Youth Involvement

We were committed to ensuring the meaningful involvement of young people, but funding and timeline constraints meant that such involvement needed to be proportional and pragmatic. Therefore, we involved YPAG members in areas where they had particular knowledge, interests, or skills, specifically data collection, analysis, and the interpretation of findings. We analyzed the data in collaboration with advisors and YPAG members who were interested in doing so and jointly interpreted the findings and decided on specific findings to be presented in the paper. In relation to dissemination, we also met YPAG members and advisors who had participated in data analysis and interpretation to understand how they would like to be acknowledged in the paper (in this study, as coauthors).

Conclusions

Although the resources involved in coproduction are significant, they yield several benefits for various stakeholder groups and across several domains. We have attempted to capture these impacts and their enabling or disabling factors in further detail in the context of the MindKind study, which focused on young people's views of mental health data governance in India, South Africa, and the United Kingdom. We found that "effective coproduction emerges in practice" [], and numerous opportunities and challenges arise in the implementation of coproduction.

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Evidencing the Impact of Web-Based Coproduction With Youth on Mental Health Research: Qualitative Findings From the MindKind Study

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Background: Public involvement in research is a growing phenomenon as well as a condition of research funding, and it is often referred to as coproduction. Coproduction involves stakeholder contributions at every stage of research, but different processes exist. However, the impact of coproduction on research is not well understood.

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NeurOX YPAG Co-produced website and content

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NeurOX YPAG Co-produced website and content

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Lots of stuff including YP designed involvement strategies, podcasts, different project communications, research

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What is our YPAG - Young People's Advisory Group?

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NeurOX YPAG Terms of Reference (+ co-produced payment policy)

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NeurOX YPAG Terms of Reference (+ co-produced payment policy)

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The Ethics of involving Young People Directly in the Research Process (O'Brien et al 2021)

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The Ethics of involving Young People Directly in the Research Process (O'Brien et al 2021)

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Ethical Research with Children: untold narratives and taboos (Clark & Boggis 2015)

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Ethical Research with Children: untold narratives and taboos (Clark & Boggis 2015)

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Table of contents (8 chapters)

About this book

An increasing interest in children's lives has tested the ethical and practical limits of research. Rather than making tricky ethical decisions, transparent researchers tend to gloss over stories that do not fit with sanitized narratives. This book aims to fill this gap by making explicit the lived experiences of research with children.

Reviews

"Ethical Research with Children: Untold Narratives and Taboos is a thought-provoking book which illuminates a range of ethical dilemmas that arise in doing research with children. ... this book is a must-read for researchers aiming to engage with the complexities of navigating research with children and their families." (Tamara Borovica, Children's Geographies, Vol. 15 (5), 2017)

About the authors

Sarah Richards is a Senior Lecturer at University Campus Suffolk, UK. Her research interests include ethnographic approaches to research, intercountry adoption policy, and stories and narratives of belonging. She has worked most recently producing a working paper on children's best interests for proposed amendments to the Hague Convention of Intercountry Adoption 2015.

Jessica Clark is a Senior Lecturer at University Campus Suffolk, UK. She is a sociologist publishing in the fields of sexualisation, children's sexual cultures and contemporary boyhoods. Jessica is committed to sex and sexuality, embodiment and ethical debates in childhood and youth research.

Allison Boggis is Senior Lecturer at University Campus Suffolk, UK. She has a particular interest in researching with marginalized groups and has extensive research experience with disabled children and young people. Her innovative and creative methodologies have attracted national and international attention. Her current research interests include e-safety, disability and ethics.

Bibliographic Information

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Table of contents (8 chapters) An increasing interest in children's lives has tested the ethical and practical limits of research. Rather than making tricky ethical decisions, transparent researchers tend to gloss over stories that do not fit with sanitized narratives. This book aims to fill this gap by making explicit the lived experiences of research with children.

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Blagrave Trust: Involving Young Londoners (participatory approaches in Youth Sector)  

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Blagrave Trust: Involving Young Londoners (participatory approaches in Youth Sector)  

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The Ethics of Research with Children and Young People (Alderson & Morrow 2020)

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The Ethics of Research with Children and Young People (Alderson & Morrow 2020)

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The Ethics of Research with Children and Young People

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Principles of consent: Children and Young People - Consent and Participant information sheet preparation guidance.

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There are many ethical and legal issues to consider when involving children and young people in research.

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NIHR: Research with children and young people

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NIHR: Research with children and young people

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Many of the ethics questions that relate to adults apply equally to children.

Researchers should ensure that risk and harm in research is minimised and that adequate protection of children and young people is ensured. They should also consider the ethics implications of silencing and excluding children from research about their views, experiences and participation.

Researchers should not assume that children are necessarily vulnerable and incapable of providing consent because of their age.

Researchers should consider children's competencies and vulnerabilities based on the purpose and context of the research as well as factors such as age, gender, socio-economic circumstances, and disability.

Specifically, the researchers may consider the following (from Morrow 2008, 2009; Save the Children, 2000, 2004):

children's potential vulnerability to exploitation in interaction with adults, and adults' specific responsibilities towards children

the differential power relationships between adult researcher and child participant, and how this may affect the child's right to withdraw or decline participating in research

the role of adult gatekeepers in mediating access to children, with associated ethics issues in relation to informed consent

the expectations of the child participants and their parents/gatekeepers and whether the involvement in research is meaningful for the children

the children's understanding of the purpose of the research and what they are contributing to

whether the information on the research and requested tasks is provided to the children in an accessible way

providing information on potential disclosure and breach of confidentiality and the reasons that this may occur

incentives and compensation for participation for children and young people, and how this may affect the principle of voluntary participation and freely-given informed consent

whether data deposit has been explained appropriately and in a way that children can understand

legal requirements of working with the specific population (including Disclosure and Barring Service clearance).

Consent from children

Where participants are children it is important to ensure that they have the time and opportunity to access support in their decision-making, for example by discussing their choice with a trusted adult.

Where consent is sought from children it is good practice to secure permission from a responsible adult in addition to child consent.

Where participants are not literate, verbal consent may be obtained, but this should, wherever possible, include a recorded written witness sign-off. In other circumstances, for example telephone interviews, this may not be possible.

Every effort should be made to deal with consent through dialogue with both children and their parents (or legal equivalent).

Researchers should consider whether mature children can confirm consent without adult approval; for example, there may be circumstances where seeking consent from parents could jeopardise the research (for instance, in research into teenage sexuality or alcohol use). In such circumstances, researchers will need to regard the potential risk to the participants of the research as a priority.

Research involving looked-after children raises complex consent and legal issues, and these should be thoroughly investigated in the context of the proposed research (see also What is freely-given informed consent?).

Disclosure and Barring Service

In most cases, researchers working with vulnerable people will need to secure Disclosure and Barring Service (DBS) clearance.

The DBS offers organisations a means to check the criminal record of researchers to ensure that they do not have a history that would make them unsuitable for work with these groups.

In some cases other individuals (such as a head teacher or social services manager) may be better placed to provide information on necessary disclosures (see the Safeguarding Vulnerable Groups Act 2006; Rehabilitation of Offenders Act 1974 and the Rehabilitation of Offenders Act 1974 (Exceptions) Order 1975).

The responsibility for ensuring that researchers are suitable to work with children and vulnerable adults rests with individual employers.

Further information

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Many of the ethics questions that relate to adults apply equally to children.

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HRA: Research involving children (clinical trials for medicinal products/consent)

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HRA: Research involving children (clinical trials for medicinal products/consent)

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The requirements for consent, where participants are children and/or young people depend on the type of study and where in the UK it is taking place.

Below you will find specific guidance on consent by and on behalf of children and young people in England, Wales and Northern Ireland.

Clinical Trial of an Investigational Medicinal Product (CTIMP)

Consent for under 16s

The Medicines for Human Use (Clinical Trials) Regulations prohibit children under the age of 16 from giving consent to take part in a Clinical Trial of an Investigational Medicinal Product (CTIMP).

Those who are able to give consent on behalf of children / young people, to take part in a CTIMP, in the UK are:

parent or someone with parental responsibility (agreement of only one parent is required)

personal legal representative i.e. a person not connected with the conduct of the trial who is suitable to act as the legal representative by virtue of their relationship with the child / young person, and is available and willing to do so

a legal representative should only ever be approached if someone with parental responsibility cannot be contacted prior to the proposed inclusion of the child / young person, by reason of the urgent nature of the treatment provided as part of the trial. If a personal legal representative is not available

professional legal representative i.e. a doctor responsible for the medical treatment of the child / young person if they are independent of the study, or a person nominated by the healthcare provider.

You must ensure that parents or legal representatives:

understand that you are asking them to give consent on behalf of the child / young person

understand the objectives, risks and inconveniences of the trial and the conditions under which it is to be conducted

have been informed of the right to withdraw the child / young person from the trial at any time

have a contact point where further information about the trial can be obtained.

Children and young people should be involved in the decision-making process whenever possible. You should ensure that they receive information about your trial, which is understandable to them.

Consent for over 16s

Young people over 16 are presumed to be capable of giving consent on their own behalf to participate in Clinical Trials of Investigational Medicinal Products (CTIMPs).

Any young person, over 16, who is not capable of giving consent, should only be included in a CTIMP in the UK in line with the adult provisions of the Medicines for Human Use (Clinical Trials) Regulations.

Consent in non-CTIMPs

There is no statute in England, Wales or Northern Ireland governing a child's right to consent to take part in research other than a Clinical Trial of an Investigational Medicinal Product (CTIMP), i.e. consent for non-CTIMPs.

Consent for treatment

Common law presumes that young people aged between 16 and 18 are usually competent to give consent to treatment.

Case law suggests that if a young person has sufficient understanding and intelligence to understand fully what is proposed, and can use and weigh this information in reaching a decision (i.e. they are 'Gillick competent'), he or she can give consent to treatment.

When a child or young person is not competent, the Children Act and the Children Act (Northern Ireland) Order permits parents (and those with parental responsibility) to consent to medical treatment on their behalf. Consent of only one parent is required.

When a young person is believed to be competent, consent from those with parental responsibility is not legally necessary. However, the involvement of parents in decision- making is encouraged in most circumstances.

Consent for research

In the absence of law relating specifically to research, it is commonly assumed that the principle of 'Gillick competence' can be applied not only to consent for treatment, but also to consent for research.

A child / young person's right to give consent is dependent upon their capacity to understand the specific circumstances and details of the research being proposed, which in turn will relate to the complexity of the research itself.

Children and young people's; competence may well be reflected in their ability or otherwise to understand and assess risk.

Competence to understand will be heavily influenced by how the information is presented to the child or young person, and the language used. You must ensure that you maximise a child / young person's chances of understanding what is involved in your study.

Consent for 16 and 17 year olds who lack capacity

If a young person, aged 16 and over, is deemed not to be competent to give consent themselves to participate in a non-CTIMP; you must proceed in line with the Mental Capacity Act (in England and Wales) or the Mental Capacity Act (Northern Ireland) 2016.

Children and young people's wishes and assent

Even when a child or young person is competent, it is still normally good practice to involve the family in the decision-making process, however, if the young person objects, you should respect their privacy.

Even when a child or young person is deemed not competent to make a decision for themselves, or in situations where they are not legally empowered to do so, (e.g. in a CTIMP), it is important that:

you give the child / young person information about your study, which is understandable to them and which explains what is involved and the potential risks and benefits

staff with experience of working with children / young people should provide this information

if the child or young person is capable of assessing the information provided you must consider their explicit wishes. This includes their refusal to take part, or desire to withdraw from the study

it is usually inappropriate to ask very young children (e.g. under fives) to sign an assent form, however their views should be considered.

Whenever practical and appropriate, a child's assent should be sought before including them in your research.

When is it appropriate to seek assent from a child?

You have to make an informed judgment to determine when seeking assent is appropriate; the age of a child can only be taken as a guide. We would usually consider it inappropriate to obtain written assent from very young children.

Consider also the child's developmental stage, knowledge of illness and experience of health care.

How are decisions usually made in the family? How much autonomy does the child normally exercise? From observation does the child wish to be involved in the discussions? What are the parent's views and can they help with this decision? They know the child best.

Although there is a danger that children can be asked to exercise greater autonomy than normal, this must be balanced with the potential loss of trust associated with denying their assent.

Such judgment needs a framework of considerations for analysis, a record of observations and discussions and a documented decision.

In circumstances where seeking assent at the outset is not appropriate you could provide the child with information as and when required (i.e. 'drip feeding').

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There are many ethical and legal issues to consider when involving children and young people in research.

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Gillick competence and Fraser guidelines | NSPCC Learning

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Gillick competence and Fraser guidelines | NSPCC Learning

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Introduction

Gillick competency and Fraser guidelines help people who work with children to balance the need to listen to children's wishes with the responsibility to keep them safe.

When practitioners are trying to decide whether a child is mature enough to make decisions about things that affect them, they often talk about whether the child is 'Gillick competent' or whether they meet the 'Fraser guidelines'.

Although the two terms are frequently used together and originate from the same legal case, there are distinct differences between them.

Both Gillick competency and Fraser guidelines refer to a legal case from the 1980s which looked at whether doctors should be able to give contraceptive advice or treatment to young people under 16-years-old without parental consent.

Applying Gillick competence and Fraser guidelines

The Fraser guidelines still apply to advice and treatment relating to contraception and sexual health. But Gillick competency is often used in a wider context to help assess whether a child has the maturity to make their own decisions and to understand the implications of those decisions.

You should always encourage a child to tell their parents or carers about the decisions they are making. If they don't want to do this, you should explore why and, if appropriate, discuss ways you could help them inform their parents or carers. For example, you could talk to the young person's parents or carers on their behalf.

If the young person still wants to go ahead without their parents' or carers' knowledge or consent, you should consider the Gillick and Fraser guidelines. The following information looks at how this can be applied in practice.

Gillick competence

Gillick competence

Gillick competency applies mainly to medical advice but it is also used by practitioners in other settings. For example, if a child or young person:

would like to have therapeutic support but doesn't want their parents or carers to know about it

is seeking confidential support for substance misuse

has strong wishes about their future living arrangements which may conflict with their parents' or carers' views.

Medical professionals need to consider Gillick competency if a young person under the age of 16 wishes to receive treatment without their parents' or carers' consent or, in some cases, knowledge.

If the young person has informed their parents of the treatment they wish to receive but their parents do not agree with their decision, treatment can still proceed if the child has been assessed as Gillick competent.

There is specific guidance for medical professionals on using Gillick competence - see case history and legislation.

Assessing Gillick competence

There is no set of defined questions to assess Gillick competency. Professionals need to consider several things when assessing a child's capacity to consent, including:

the child's age, maturity and mental capacity

their understanding of the issue and what it involves - including advantages, disadvantages and potential long-term impact

their understanding of the risks, implications and consequences that may arise from their decision

how well they understand any advice or information they have been given

their understanding of any alternative options, if available

their ability to explain a rationale around their reasoning and decision making.

Remember that consent is not valid if a young person is being pressured or influenced by someone else.

Children's capacity to consent may be affected by different factors, for example stress, mental health conditions and the complexities of the decision they are making. The same child may be considered Gillick competent to make one decision but not competent to make a different decision.

If you don't think a child is Gillick competent or there are inconsistencies in their understanding, you should seek consent from their parents or carers before proceeding.

In complex medical cases, such as those involving disagreements about treatment, you may wish to seek the opinion of a colleague about a child's capacity to consent (Care Quality Commission, 2019).

Young people also have the right to seek a second opinion from another medical professional (General Medical Council, 2020).

Refusal of medical treatment

Gillick competency can be used when young people wish to refuse medical treatment.

However, if a young person refuses treatment which may lead to their death or severe permanent harm, their decision can be overruled. More information about this is available in the guidance for medical professionals in each UK nation - see case history and legislation.

Child protection concerns

The child's safety and wellbeing is paramount.

When you are assessing Gillick competency if you have any concerns about the safety of the young person you should check whether previous child protection concerns have been raised, and explore any factors that could put them at risk of abuse.

You must always share child protection concerns with the relevant agencies, even if this goes against a child's wishes.
> Find out more about recognising and responding to abuse

Fraser guidelines

Fraser guidelines

The Fraser guidelines apply specifically to advice and treatment about contraception and sexual health. They may be used by a range of healthcare professionals working with under 16-year-olds, including doctors and nurse practitioners.

Following a legal ruling in 2006, Fraser guidelines can also be applied to advice and treatment for sexually transmitted infections and the termination of pregnancy (Axton v The Secretary of State for Health, 2006).

Using the Fraser guidelines

Practitioners using the Fraser guidelines should be satisfied of the following:

the young person cannot be persuaded to inform their parents or carers that they are seeking this advice or treatment (or to allow the practitioner to inform their parents or carers).

the young person understands the advice being given.

the young person's physical or mental health or both are likely to suffer unless they receive the advice or treatment.

it is in the young person's best interests to receive the advice, treatment or both without their parents' or carers' consent.

the young person is very likely to continue having sex with or without contraceptive treatment.

(Gillick v West Norfolk, 1985)

Child protection concerns

When using Fraser guidelines for issues relating to sexual health, you should always consider any potential child protection concerns:

Underage sexual activity is a possible indicator of child sexual exploitation and children who have been groomed may not realise they are being abused.

Sexual activity with a child under 13 should always result in a child protection referral.

If a young person presents repeatedly about sexually transmitted infections or the termination of pregnancy this may be an indicator of child sexual abuse or exploitation.

You should always consider any previous concerns that may have been raised about the young person and explore whether there are any factors that may present a risk to their safety and wellbeing.

You must always share child protection concerns with the relevant agencies, even if a child or young person asks you not to.

> Find out more about recognising and responding to abuse

Case history, legislation and guidance

Gillick v West Norfolk and Wisbech Area Health Authority 1986

In 1982 Victoria Gillick took her local health authority (West Norfolk and Wisbech Area Health Authority) and the Department of Health and Social Security to court in an attempt to stop doctors from giving contraceptive advice or treatment to under 16-year-olds without parental consent.

The case went to the High Court in 1984 where Mr Justice Woolf dismissed Mrs Gillick's claims. The Court of Appeal reversed this decision, but in 1985 it went to the House of Lords and the Law Lords (Lord Scarman, Lord Fraser and Lord Bridge) ruled in favour of the original judgment delivered by Mr Justice Woolf:

"...whether or not a child is capable of giving the necessary consent will depend on the child's maturity and understanding and the nature of the consent required. The child must be capable of making a reasonable assessment of the advantages and disadvantages of the treatment proposed, so the consent, if given, can be properly and fairly described as true consent" (Gillick v West Norfolk, 1984).

What are the Fraser guidelines?

The Fraser guidelines refer to the guidelines set out by Lord Fraser in his judgment of the Gillick case in the House of Lords (Gillick v West Norfolk, 1985), which apply specifically to contraceptive advice.

Lord Fraser stated that a doctor should always encourage a girl aged under 16 to inform her parents or carers that she is seeking contraceptive advice (or allow the doctor to inform the parents or carers on her behalf). But if she cannot be persuaded to do so they can proceed to give contraceptive advice and treatment as long as certain conditions are met. This includes making sure it's in the girl's best interests for advice to be given and that she understands the advice.
> Find out more about using the Fraser guidelines
What is Gillick competence?

Lord Scarman's comments in his judgment of the Gillick case in the House of Lords (Gillick v West Norfolk, 1985) are often referred to as the test of "Gillick competency". He said:

"...it is not enough that she should understand the nature of the advice which is being given: she must also have a sufficient maturity to understand what is involved."

He also commented more generally on parents' versus children's rights:

"parental right yields to the child's right to make his own decisions when he reaches a sufficient understanding and intelligence to be capable of making up his own mind on the matter requiring decision."
> Find out more about assessing Gillick competency
Legislation and guidance

Gillick v West Norfolk and Wisbech Area Health Authority went to the House of Lords and is often used as a legal precedent across the UK.

In Scotland, the Age of Legal Capacity (Scotland) Act 1991 sets out when children have the legal capacity to make decisions. Section 2 sets out when a child under the age of 16 can consent to medical treatment or procedures.

Medical guidance

In England, the Department of Health and Social Care provides guidance for medical professionals on the legal framework they need to consider when obtaining valid consent to examination, treatment or care (Department of Health and Social Care, 2009).

In Northern Ireland the Department of Health provides consent guides for healthcare professionals (Department of Health, 2003).

In Scotland the NHS has provided a good practice guide on consent for health professionals (PDF) (Scottish Executive Health Department, 2006).

References and resources

References and resources

Axton v The Secretary of State for Health (The Family Planning Association: intervening) (2006) EWHC 37. As cited in Family Law Week.

Care Quality Commission (2019). Brief guide: capacity and competence to consent in under 18s (PDF). Care Quality Commission.

Department of Health (2003). Consent guides for healthcare professionals. [Accessed 02/02/2020].

Department of Health and Social Care (2009) Reference guide to consent for examination or treatment (second edition). London: Department of Health and Social Care.

Gillick v West Norfolk and Wisbech Area Health Authority and Department of Health and Social Security [1984] Q.B. 581. As cited in Children's Legal Centre (1985) Landmark decision for children's rights. Childright, 22: 11-18.

Gillick v West Norfolk & Wisbech Area Health Authority, UKHL 7 (17 October 1985) Available via (BAILII) in The law reports (appeal cases) [1986] AC 112.

Scottish Executive Health Department (2006). A good practice guide on consent for health professionals in NHS Scotland (PDF). Edinburgh: Scottish Executive

Childline

If a child or young person needs confidential help and advice direct them to Childline. Calls to 0800 1111 are free and children can also contact Childline online or read about children's rights on the Childline website.

You can also download or order Childline posters and wallet cards.

Elearning

Our online and face-to-face training courses can help develop your understanding of how to protect children from abuse and safely recruit staff and volunteers to work with children:

Further reading

For further reading about Gillick competency and Fraser guidelines, search the NSPCC Library catalogue using the keywords "Gillick competency" and "Fraser guidelines".
> Find out more about the Library and Information Service

Introduction

Gillick competency and Fraser guidelines help people who work with children to balance the need to listen to children's wishes with the responsibility to keep them safe.

When practitioners are trying to decide whether a child is mature enough to make decisions about things that affect them, they often talk about whether the child is 'Gillick competent' or whether they meet the 'Fraser guidelines'.

Although the two terms are frequently used together and originate from the same legal case, there are distinct differences between them.

Both Gillick competency and Fraser guidelines refer to a legal case from the 1980s which looked at whether doctors should be able to give contraceptive advice or treatment to young people under 16-years-old without parental consent.

Applying Gillick competence and Fraser guidelines

The Fraser guidelines still apply to advice and treatment relating to contraception and sexual health. But Gillick competency is often used in a wider context to help assess whether a child has the maturity to make their own decisions and to understand the implications of those decisions.

You should always encourage a child to tell their parents or carers about the decisions they are making. If they don't want to do this, you should explore why and, if appropriate, discuss ways you could help them inform their parents or carers. For example, you could talk to the young person's parents or carers on their behalf.

If the young person still wants to go ahead without their parents' or carers' knowledge or consent, you should consider the Gillick and Fraser guidelines. The following information looks at how this can be applied in practice.

Gillick competence

Gillick competence

Gillick competency applies mainly to medical advice but it is also used by practitioners in other settings. For example, if a child or young person:

would like to have therapeutic support but doesn't want their parents or carers to know about it

is seeking confidential support for substance misuse

has strong wishes about their future living arrangements which may conflict with their parents' or carers' views.

Medical professionals need to consider Gillick competency if a young person under the age of 16 wishes to receive treatment without their parents' or carers' consent or, in some cases, knowledge.

If the young person has informed their parents of the treatment they wish to receive but their parents do not agree with their decision, treatment can still proceed if the child has been assessed as Gillick competent.

There is specific guidance for medical professionals on using Gillick competence - see case history and legislation.

Assessing Gillick competence

There is no set of defined questions to assess Gillick competency. Professionals need to consider several things when assessing a child's capacity to consent, including:

the child's age, maturity and mental capacity

their understanding of the issue and what it involves - including advantages, disadvantages and potential long-term impact

their understanding of the risks, implications and consequences that may arise from their decision

how well they understand any advice or information they have been given

their understanding of any alternative options, if available

their ability to explain a rationale around their reasoning and decision making.

Remember that consent is not valid if a young person is being pressured or influenced by someone else.

Children's capacity to consent may be affected by different factors, for example stress, mental health conditions and the complexities of the decision they are making. The same child may be considered Gillick competent to make one decision but not competent to make a different decision.

If you don't think a child is Gillick competent or there are inconsistencies in their understanding, you should seek consent from their parents or carers before proceeding.

In complex medical cases, such as those involving disagreements about treatment, you may wish to seek the opinion of a colleague about a child's capacity to consent (Care Quality Commission, 2019).

Young people also have the right to seek a second opinion from another medical professional (General Medical Council, 2020).

Refusal of medical treatment

Gillick competency can be used when young people wish to refuse medical treatment.

However, if a young person refuses treatment which may lead to their death or severe permanent harm, their decision can be overruled. More information about this is available in the guidance for medical professionals in each UK nation - see case history and legislation.

Child protection concerns

The child's safety and wellbeing is paramount.

When you are assessing Gillick competency if you have any concerns about the safety of the young person you should check whether previous child protection concerns have been raised, and explore any factors that could put them at risk of abuse.

You must always share child protection concerns with the relevant agencies, even if this goes against a child's wishes.
> Find out more about recognising and responding to abuse

Fraser guidelines

Fraser guidelines

The Fraser guidelines apply specifically to advice and treatment about contraception and sexual health. They may be used by a range of healthcare professionals working with under 16-year-olds, including doctors and nurse practitioners.

Following a legal ruling in 2006, Fraser guidelines can also be applied to advice and treatment for sexually transmitted infections and the termination of pregnancy (Axton v The Secretary of State for Health, 2006).

Using the Fraser guidelines

Practitioners using the Fraser guidelines should be satisfied of the following:

the young person cannot be persuaded to inform their parents or carers that they are seeking this advice or treatment (or to allow the practitioner to inform their parents or carers).

the young person understands the advice being given.

the young person's physical or mental health or both are likely to suffer unless they receive the advice or treatment.

it is in the young person's best interests to receive the advice, treatment or both without their parents' or carers' consent.

the young person is very likely to continue having sex with or without contraceptive treatment.

(Gillick v West Norfolk, 1985)

Child protection concerns

When using Fraser guidelines for issues relating to sexual health, you should always consider any potential child protection concerns:

Underage sexual activity is a possible indicator of child sexual exploitation and children who have been groomed may not realise they are being abused.

Sexual activity with a child under 13 should always result in a child protection referral.

If a young person presents repeatedly about sexually transmitted infections or the termination of pregnancy this may be an indicator of child sexual abuse or exploitation.

You should always consider any previous concerns that may have been raised about the young person and explore whether there are any factors that may present a risk to their safety and wellbeing.

You must always share child protection concerns with the relevant agencies, even if a child or young person asks you not to.

> Find out more about recognising and responding to abuse

Case history, legislation and guidance

Gillick v West Norfolk and Wisbech Area Health Authority 1986

In 1982 Victoria Gillick took her local health authority (West Norfolk and Wisbech Area Health Authority) and the Department of Health and Social Security to court in an attempt to stop doctors from giving contraceptive advice or treatment to under 16-year-olds without parental consent.

The case went to the High Court in 1984 where Mr Justice Woolf dismissed Mrs Gillick's claims. The Court of Appeal reversed this decision, but in 1985 it went to the House of Lords and the Law Lords (Lord Scarman, Lord Fraser and Lord Bridge) ruled in favour of the original judgment delivered by Mr Justice Woolf:

"...whether or not a child is capable of giving the necessary consent will depend on the child's maturity and understanding and the nature of the consent required. The child must be capable of making a reasonable assessment of the advantages and disadvantages of the treatment proposed, so the consent, if given, can be properly and fairly described as true consent" (Gillick v West Norfolk, 1984).

What are the Fraser guidelines?

The Fraser guidelines refer to the guidelines set out by Lord Fraser in his judgment of the Gillick case in the House of Lords (Gillick v West Norfolk, 1985), which apply specifically to contraceptive advice.

Lord Fraser stated that a doctor should always encourage a girl aged under 16 to inform her parents or carers that she is seeking contraceptive advice (or allow the doctor to inform the parents or carers on her behalf). But if she cannot be persuaded to do so they can proceed to give contraceptive advice and treatment as long as certain conditions are met. This includes making sure it's in the girl's best interests for advice to be given and that she understands the advice.
> Find out more about using the Fraser guidelines
What is Gillick competence?

Lord Scarman's comments in his judgment of the Gillick case in the House of Lords (Gillick v West Norfolk, 1985) are often referred to as the test of "Gillick competency". He said:

"...it is not enough that she should understand the nature of the advice which is being given: she must also have a sufficient maturity to understand what is involved."

He also commented more generally on parents' versus children's rights:

"parental right yields to the child's right to make his own decisions when he reaches a sufficient understanding and intelligence to be capable of making up his own mind on the matter requiring decision."
> Find out more about assessing Gillick competency
Legislation and guidance

Gillick v West Norfolk and Wisbech Area Health Authority went to the House of Lords and is often used as a legal precedent across the UK.

In Scotland, the Age of Legal Capacity (Scotland) Act 1991 sets out when children have the legal capacity to make decisions. Section 2 sets out when a child under the age of 16 can consent to medical treatment or procedures.

Medical guidance

In England, the Department of Health and Social Care provides guidance for medical professionals on the legal framework they need to consider when obtaining valid consent to examination, treatment or care (Department of Health and Social Care, 2009).

In Northern Ireland the Department of Health provides consent guides for healthcare professionals (Department of Health, 2003).

In Scotland the NHS has provided a good practice guide on consent for health professionals (PDF) (Scottish Executive Health Department, 2006).

References and resources

References and resources

Axton v The Secretary of State for Health (The Family Planning Association: intervening) (2006) EWHC 37. As cited in Family Law Week.

Care Quality Commission (2019). Brief guide: capacity and competence to consent in under 18s (PDF). Care Quality Commission.

Department of Health (2003). Consent guides for healthcare professionals. [Accessed 02/02/2020].

Department of Health and Social Care (2009) Reference guide to consent for examination or treatment (second edition). London: Department of Health and Social Care.

Gillick v West Norfolk and Wisbech Area Health Authority and Department of Health and Social Security [1984] Q.B. 581. As cited in Children's Legal Centre (1985) Landmark decision for children's rights. Childright, 22: 11-18.

Gillick v West Norfolk & Wisbech Area Health Authority, UKHL 7 (17 October 1985) Available via (BAILII) in The law reports (appeal cases) [1986] AC 112.

Scottish Executive Health Department (2006). A good practice guide on consent for health professionals in NHS Scotland (PDF). Edinburgh: Scottish Executive

Childline

If a child or young person needs confidential help and advice direct them to Childline. Calls to 0800 1111 are free and children can also contact Childline online or read about children's rights on the Childline website.

You can also download or order Childline posters and wallet cards.

Elearning

Our online and face-to-face training courses can help develop your understanding of how to protect children from abuse and safely recruit staff and volunteers to work with children:

Further reading

For further reading about Gillick competency and Fraser guidelines, search the NSPCC Library catalogue using the keywords "Gillick competency" and "Fraser guidelines".
> Find out more about the Library and Information Service

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Gillick competence and Fraser guidelines | NSPCC Learning

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Gillick competency is often used to assess whether a child is mature enough to consent to treatment. Fraser guidelines are used for issues relating to sexual health.

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Research with children: ethics, safety and promoting inclusion | NSPCC Learning

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Research with children: ethics, safety and promoting inclusion | NSPCC Learning

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Once you have identified potential risks, you should establish how you can avoid or minimise them.

Explain research confidentiality and obtain consent

Before taking part, children should understand the nature of the research and what will be expected of them.

It is important to explain confidentiality to the child before they give their consent and at the beginning of the research process. Explain:

how you will use what they tell you

how you will keep that confidential

who else will see their data

when you will have to break confidentiality and the process that you will follow.

> Find out more about sharing information
Adapt the collection methodology

The way information is collected can minimise distress caused to children. For example:

position sensitive questions in the middle of an interview or focus group session to allow the children to warm up and cool down from these topics

take breaks during data collection

conduct the research in a friendly and comfortable environment

avoid times of day when support services aren't available.

Respond to distress and disclosures

It's important to have a clear plan for responding to children's distress or disclosures of harm to themselves or someone else.

You should have a process in place for referring child protection concerns. You should also provide information or encourage participants to seek help when an unmet need, such as a mental health concern, is disclosed.

Debriefing children at the end of the research can help identify any needs. This also provides another opportunity to refer participants to appropriate help or address any concerns.

Signpost to sources of further support

It is good practice to give children information about sources of support and remind them of these throughout the process.

A thank you leaflet containing information and contact details is particularly useful and should be given to all participants.

Childline provides confidential help and advice to children or young people. Calls to 0800 1111 are free and children can also contact Childline online. You can also download or order Childline posters and wallet cards.

Assess and mitigate risks to researchers

You should also consider the potential impact of research on the researchers.

If researchers feel affected by what is discussed during the sessions, they should seek support through supervision with their manager. It may also be helpful to direct them to the NSPCC helpline to talk about anything that is concerning them.

Research supervisors should ensure that proper attention is paid to the researcher's safety, particularly in lone working situations.
> Take a look at our guidance on lone working
Set out and approve your research plan

You should produce a research plan which clearly outlines, assesses and provides mitigation for potential risks.

Where possible, we recommend that plans for research with children are approved through a rigorous ethics review process by an appropriate ethics body.
> Read more about how the NSPCC approaches research governance

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Research with children: ethics, safety and promoting inclusion | NSPCC Learning

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Explains what researchers need to consider when involving children in their research and includes information on ethics in child research and identifying risks.

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Ethical Research Involving Children, ERIC, Child Ethics

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Ethical Research Involving Children, ERIC, Child Ethics

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ERIC is an ongoing collaborative partnership between the Centre for Children and Young People at Southern Cross University, Australia, and UNICEF's Office of Research, Innocenti.

ERIC aims to assist researchers and the research community to understand, plan and conduct ethical research involving children and young people in any geographical, social, cultural or methodological context.

ERIC is motivated by a shared international concern that the human dignity of children is honoured and their rights and wellbeing are respected in all research, regardless of context. The critically important element in achieving this is YOU - your attitudes, values, beliefs, assumptions and practice - since these ultimately shape the research experience for children much more than any written procedures or checklist.

Many researchers report feeling isolated in their research activities, despite the increasing emphasis placed on the value, importance and legitimacy of research that captures the views and perspectives of children and young people. This sense of isolation is increased when it comes to making informed decisions about complex ethical and methodological issues.

This ERIC website has been specifically designed to provide a rich repository of information and resources to assist researchers, and guide and improve research involving children. It also aims to encourage critical reflection, dialogue and collegiality within and across the international research community.

We hope you will find this website useful in reflecting on your research and the children and young people involved. We warmly welcome your comments, suggestions and contributions.

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Ethical Research Involving Children, ERIC, Child Ethics

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ERIC is an ongoing collaborative partnership between the Centre for Children and Young People at Southern Cross University, Australia, and UNICEF's Office of Research, Innocenti. ERIC aims to assist researchers and the research community to understand, plan and conduct ethical research involving children and young people in any geographical, social, cultural or methodological context.

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These pages sit alongside our Guide to the UK GDPR and provide more detailed, practical guidance for organisations who are processing children's personal data under the UK GDPR.

This guidance focuses on the additional, child specific considerations. You must also read the Guide to UK GDPR for the requirements that apply to all data subjects.

When we refer to a child we mean anyone under the age of 18. This is in accordance with the UN Convention on the Rights of the Child which defines a child as everyone under 18 unless, "under the law applicable to the child, majority is attained earlier" (Office of the High Commissioner for Human Rights, 1989). The UK has ratified this convention.

When we refer to someone with parental responsibility for a child we mean someone who, according to the law in the child's country of residence, has the legal rights and responsibilities for a child that are normally afforded to parents. This will not always be a child's 'natural parents' and parental responsibility can be held by more than one natural or legal person.

The UK GDPR contains provisions intended to enhance the protection of children's personal data and to ensure that children are addressed in plain clear language that they can understand. Transparency and accountability are important where children's data is concerned and this is especially relevant when they are accessing online services. However, in all circumstances you need to carefully consider the level of protection you are giving that data.

This guidance will help you understand the child specific considerations you need to think about when deciding on your lawful basis for processing a child's personal data.

It will help you understand what you need to do when you offer an information society service (ISS) to a child and process their personal data on the basis of consent, and what you need to consider if you are thinking about marketing or profiling children.

It also explains what you need to include in your privacy notices, and what rights children have under the UK GDPR.

For an introduction to the key themes and provisions of the UK GDPR, you should refer to the Guide to the UK GDPR. You can navigate back to the Guide at any time using the link at the top of this page. Links to other relevant guidance and sources of further information are also provided throughout.

When downloading this guidance, the corresponding content from the Guide to the UK GDPR will also be included so you will have all the relevant information on this topic.

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These pages sit alongside our Guide to the GDPR and provide more detailed, practical guidance for UK organisations who are processing children's personal data under the GDPR.

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March 27, 2023

It's taken many iterations, a lot of heart felt discussions and input from many people involved in our community over several years, but we are pleased to say our co-produced Payment Policy is finally ready to share with you! Please have a read and let us know what you think.

The policy is for anyone who co-produces with Co-Production Collective. It explains who we can offer payment to, in what circumstances; rates and methods of payment; and information about expenses. It also signposts to further resources and support.

We also have the following versions of the policy available to download from this Google Drive folder:

A screen reader friendly version - as a Word document and as a PDF document.

A large font version - as a Word document

An audio version - as a MP3 file

Versions of the Interactive summary in Braille, EPUB, DAISY, MOBI

If you would like a different format or another version of Braille not listed please ask us, we will happily send this to you - you can contact us via email on coproduction@ucl.ac.uk.

What has it taken to get here?

Well, we began discussing payment in co-production right back at the start during our early days in 2017! Then at the launch of the Co-Production Collective in October 2020 we announced that we felt it was time for us to co-produce our own payment policy! A draft policy was put together and shared in December 2020 which had a huge response and led to two co-creation sessions in May 2021 where some of the more complicated issues were worked through together. Further drafts were then shared and fed back on, and these led to the payment policy you see today.

From all of this work we have endeavoured to create a policy which at its heart has a flexible and person-centred approach. One that reflects our core values and recognises how much we all benefit from a community made up of co-producers with different circumstances, backgrounds and experiences.

We appreciate that accepting payment may not always be comfortable or the right thing for everyone, so if you have any questions about the policy or anything that arises from it, please get in touch and we will do our best to support you. Aside from payment we are also looking at offering other benefits to anyone involved in our work, such as peer support, training opportunities and records of achievement.

What happens next?

Our payment policy will always be a work in progress. We know it's not perfect but hope that this current version, which launches today, is a good place to build from as we continue to develop as Co-Production Collective. We will be reviewing it every six months so if you have any feedback for us, please email us on coproduction@ucl.ac.uk.

Thank you everyone!

Finally, we just want to say a big, big, big thank you to everyone who has contributed to the co-creation process. Whether you commented on a draft, attended a session, or shared your learning, this policy wouldn't exist without each and every one of you and we are really grateful for all your contributions.

We would particularly like to mention two former staff members of the Collective Lizzie Cain and Susan Anderson who spent many many hours working on it, thank you!

‍
Image credit: Andre Taissin via Unsplash.
‍

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Our co-produced Payment Policy is finally here!

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March 27, 2023 It's taken many iterations, a lot of heart felt discussions and input from many people involved in our community over several years, but we are pleased to say our co-produced Payment Policy is finally ready to share with you! Please have a read and let us know what you think.

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Association for Young People's Health (AYPH): YPs perspectives on ethics of engagement and co-production

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Association for Young People's Health (AYPH): YPs perspectives on ethics of engagement and co-production

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Young people and an NHS participation worker reflect on their involvement in a creative, collaborative mental health research project (Allan et al. 2017)

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Young people and an NHS participation worker reflect on their involvement in a creative, collaborative mental health research project (Allan et al. 2017)

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Most UK child and adolescent mental health services (CAMHS) support young people up to the age of 17/18, at which point they are discharged, or transition to an adult service. This transition is often difficult for young people, as they also face the complex physical and psychosocial changes of adolescence. Transition from CAMHS is often poorly managed, with negative outcomes for young people. Improved preparation may improve both outcomes and experience. We worked with 17 young people and staff from three NHS mental health foundation trusts to co-produce the CAMHS Transition Preparation Programme (TPP), deliverable in routine NHS settings. We took a creative, participatory approach to maximize young people's involvement in the research. Young people steered the direction of the work, and were involved in decision-making and dissemination both nationally and within their trusts. In this commentary, two young participant-researchers and one NHS staff member describe the project from their perspectives.

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Young people and an NHS participation worker reflect on their involvement in a creative, collaborative mental health research project

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Most UK child and adolescent mental health services (CAMHS) support young people up to the age of 17/18, at which point they are discharged, or transition to an adult service. This transition is often difficult for young people, as they also face the complex physical and psychosocial changes of adolescence.

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The Generation R Alliance/eYPAGnet Toolkit will help you set up and run a Young Persons Advisory Group, allowing the voices of children and young people to be heard in research.

The Toolkit was written by facilitators of the GenerationR Alliance and eYPAGnet YPAGs.

Setting up and organising a YPAG can be challenging and time consuming. Ultimately, it is rewarding and often fun as no meeting or group is ever the same! It is a huge learning experience for everyone involved.

It is important to realise that what works for some groups may work for others. Collaboration and learning from each other is key.

The toolkit is designed to take you through each part of the process of setting up a YPAG, and is split into four sections recommended by our users:

1. Understanding why it is important

2. Getting started

3. Delivering a meeting

4. Evaluating the work, and the impact a YPAG can have on both the participants themselves and on child health research.

We hope that the toolkit answers many of your questions, gives handy tips and advice and gives you the confidence to get started, allowing children and young people to make a real and valid difference to child health research.

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The Generation R Alliance/eYPAGnet Toolkit will help you set up and run a Young Persons Advisory Group, allowing the voices of children and young people to be heard in research. The Toolkit was written by facilitators of the GenerationR Alliance and eYPAGnet YPAGs. Setting up and organising a YPAG can be challenging and time consuming.

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Ethical research involving children (ERIC): Charter

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Ethical research involving children (ERIC): Charter

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Young Researchers: Toolkit (Brady and Graham 2022)

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Young Researchers: Toolkit (Brady and Graham 2022)

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Barnados

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Website of a Community Land Trust set up by a community. A Community Land Trust (CLT) is a not for profit community-based organisation run by volunteers that delivers housing and other community facilities at permanently affordable levels for local people. There are a number of benefits to setting up and running a CLT.

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Youth Justice Resource Hub: Participation in Practice and Co-creation Project - Peer Power Project (July 2021)

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Youth Justice Resource Hub: Participation in Practice and Co-creation Project - Peer Power Project (July 2021)

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Summary:
Attached are a variety of materials created by Peer Power to support the delivery of participatory approaches.

The Youth Justice Board's commitment to Child First and the importance of participation as part of this approach, teamed with our continued commitment to develop and better understand how outcomes can be improved for children in the youth justice system, led to the formation of this project.

This project was split into three phases, the aim of the project was to;

complete an audit of participatory practice within youth justice services across England and Wales

complete an in-depth examination of participatory practice with a small number of youth justice services

gather and share examples of participatory practice and co-production with children who have lived experience

Description:
In 2021 Peer Power Youth worked in partnership with the Youth Justice Board for England and Wales on a project that aimed to explore co-creation and participation in the Youth Justice Services (YJS).

The products from this project include;

Research Findings

Portfolio of resources/ documents

Recommendations for youth justice services and the YJB, that were developed with Peer Power Experts (children) and the working group.

These recommendations are in response to analysis and a reflection of the findings from both the survey and the Deep Dive sessions and are covered in depth in each section.

The following resources were produced as a result of this project:
1. How to use this Resource Pack

2. Findings from the YJS Survey - This shows the results and key findings to help children and practitioners and Survey Results: Participation and Co-creation in the Youth Justice System Report - This shows the full survey results.

3. Young Reader Report 'Co-creation and Participation in the Youth Justice System'-- This is a summary of the longer report and can be used by children to learn about the project and for YJS to reflect upon their strengths in participation, co-creation and areas for improvement.

4. Report 'Co-creation and Participation in the Youth Justice Sector' - This longer report describes the journey Peer Power went on to co-create the project and share what they learnt to help YJS. There is a list of helpful links for YJS practitioners wanting to learn more about participation and co-creation including self-assessment tools.

5. Tips for Digital Inclusion - This aims to help YJS Practitioners to become more comfortable with engaging children in participation and co-creation digitally.

6. Voice and Influence Charter - Peer Power have created two resources to outline the five key principles to participation and co-creation that underpin good participatory practice. The Charter and Films below can be used together or separately.

7. The Pick and Mix of Participation - Helps the YJS to consider what method of participation they might pick for different types of activities.

8. Are You Really Co-creating - This resource explains to YJS practitioners and managers how they can use the Pick and Mix resource.

9. Directory of Participation and Directory of Incentives - gives more examples from the project findings of participation and co-creation that are happening across YJS.

10. Peer Power Code of Ethics for Story Telling - Developed by Peer Power Experts, this resource sets out what they believe to be ethical story telling

11. Peer Power Co-Production film - This film explains what co-production and system change means to children and practitioners working in the health and justice sector. It can be used to introduce participation and co-creation to practitioners and children. The film has been split into 5 bitesize chunks (a) rights and readiness (b) resources (c) strengths and positivity (d) power and inclusion (e) relate and respect
Contact:

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Participation in Practice and Co-creation Project - Peer Power Project (July 2021) - Youth Justice Resource Hub

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Summary: Attached are a variety of materials created by Peer Power to support the delivery of participatory approaches. Aims: The Youth Justice Board's commitment to Child First and the importance of participation as part of this approach, teamed with our continued commitment to...

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GenerationR: National Network (GenerationR Alliance) of Young People’s Advisory Group’s (YPAGs) based across the UK

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GenerationR: National Network (GenerationR Alliance) of Young People’s Advisory Group’s (YPAGs) based across the UK

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Co-produuction and involvement at University of Oxford/Oxford Health Biomedical Research Centre

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Skip to content Start your research journey here Keep following our instagram page and we'll let you know of opportunities to get involved in research and new projects when our accessible recruitment goes live ... Follow us on Instagram

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Conceptualizing Youth Participation in Children’s Health Research: Insights from a Youth-Driven Process for Developing a Youth Advisory Council (Arunkumar et al. 2019)

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Conceptualizing Youth Participation in Children’s Health Research: Insights from a Youth-Driven Process for Developing a Youth Advisory Council (Arunkumar et al. 2019)

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Conceptualizing Youth Participation in Children’s Health Research: Insights from a Youth-Driven Process for Developing a Youth Advisory Council

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Given the power asymmetries between adults and young people, youth involvement in research is often at risk of tokenism. While many disciplines have seen a shift from conducting research on youth to conducting research with and for youth, engaging children and teens in research remains fraught with…

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Conceptualising children and young people’s participation: examining vulnerability, social accountability and co-production (Tisdall, 2016)

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Conceptualising children and young people’s participation: examining vulnerability, social accountability and co-production (Tisdall, 2016)

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Ethical and safe: Research with children about domestic violence (Morris et al 2012)

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Ethical and safe: Research with children about domestic violence (Morris et al 2012)

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EPPI centre blog: Involving young people with lived experience of adverse childhood experience (ACEs) in a systematic review (Brady, Lester 2018)

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EPPI centre blog: Involving young people with lived experience of adverse childhood experience (ACEs) in a systematic review (Brady, Lester 2018)

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What is the review about?

Adverse Childhood Experiences (ACEs) are stressful experiences that happen during childhood or adolescence that directly harm a child or negatively affect the environment in which they live. It is estimated that almost half of adults in England have been exposed to at least one form of adversity during their childhood or adolescence. A large US study in the 1990s first popularised the term ACEs and explored the negative impact of unaddressed childhood adversity on people's health and behaviour across the life course. More recent research suggests that at least one in three diagnosed mental health conditions in adulthood directly relate to trauma brought about by ACEs.

The alarming prevalence and consequences of ACEs are largely understood, but the Department of Health and Social Care want to know what helps improve the lives of people with experience of ACEs. We are currently conducting a review of reviews to try to answer this question as part of the Department of Health and Social Care Reviews Facility. Our definition of ACE populations is informed by the previously mentioned US study and the UCL Institute of Health Equity's ACE review. It spans twelve distinct but interrelated populations.

Populations as defined for the ACEs review

Why did we want to involve young people in the review?

The 1989 UN Convention on the Rights of the Child established international recognition that all children have a right to have a say in decisions that affect them.
However, the voices of young people who are deemed to be 'vulnerable' are often absent from the literature and consequently there is the risk that they will be underrepresented in the key outputs designed to inform policy (see findings from the UN Committee on the Rights of Child, UNRC, 2016, p.6-7). Involvement should also lead to research, and ultimately services, that better reflect young people's priorities and concerns ( Brady et al., 2018). With this in mind, we wanted to consult with young people with lived experience of ACEs in order to keep our review grounded in their experience and perspectives.

We decided to hold a workshop during the early stages of the review process to help us to verify whether the evidence we were finding was relevant to the current UK context and young people's lived experience, and to explore how we might involve young people later on in the review if possible, or in future research.

While involving children and young people in research is still an emerging field ( Parsons et al. 2018), the work discussed here builds on previous research on involving young people in systematic reviews ( Jamal et al., 2014, Oliver et al., 2015).

How did we involve young people?

We began by identifying and contacting organisations who worked with young people affected by ACEs, as well as researchers and topic experts. We aimed to recruit between five and ten young people, knowing from previous experience that this was an optimum number to encourage everyone to talk. On the day, seven young people attended, most supported to do so by a mentor from the National Children's Bureau.
At the workshop we spoke to the young people about our project. It was too early to relay concrete findings, but we told them about some emerging patterns in the research. As well as covering specific topics such as counselling and therapy (which dominates the effectiveness research), and discussing the kinds of outcomes they valued, the majority of the discussion took place around three main questions:

1. What kinds of problems might children and young people affected by ACEs have?

2. How might ACEs affect people differently (i.e depending on their gender, background, age)?

3. What might help children and young people who are exposed to ACEs?

Our young advisors were very forthcoming in their responses to these broad questions as it provided a platform for everyone to contribute. In our original itinerary, we had allowed just ten minutes per question (out of a three-hour session) but we found that this activity was so fruitful and it provided such fertile ground for relevant discussions that we expanded the time allocation for this section. It was clear that the young people we consulted were already research literate and eager to contribute more. We thus discovered that allowing the group to explore these question was a better use of their time than talking through lots of detailed slides on concepts they were already familiar with.

Key Learning Points

A thorough ethics application, co-creating ground rules, encouraging questions, and taking time to go through the consent form, were all essential to creating an atmosphere of mutual respect.
Being flexible and attentive to the individual preferences within the group maximised the usefulness of the workshop. Some young people were apprehensive about writing things down, preferring to talk out loud, whereas others found it easier to write their responses down on post it notes. We used a mixture of written and verbal, group and individual work in order to accommodate these various needs.
Being well prepared and knowing the material well helped us to move fluidly through the session.
We provided an information pack for the young people which we referred to throughout the session. It helped to give a sense of reassurance that the conversation could continue after the workshop and allowed more latitude for those working at different paces.
This echoes previous work by Dr Brady on involving young people with lived experience of substance misuse services: young people valued being able to use difficult personal experiences to create positive change, but doing so safely required being sensitive to individual circumstances and providing opportunities for young people who want to be involved to do so in ways that work for them ( Brady et al., 2018).

Managing disclosure was also an important learning point. We explained to the young people early in the process that, although they were at the workshop because of their lived experience of ACEs, they did not need to share any personal details. However, several chose to do so, and this needed to be managed carefully to create a safe and comfortable space for everyone involved. Some of the young people who attended were also still going through difficult experiences and one needed time out because she was finding participation difficult. She left the session to sit in a nearby quiet room with the mentor who had accompanied her; and we made it clear she did not have to stay. But she chose to do so and re-joined the group for another section when she was ready. So some of our learning was around the need to expect the unexpected and be flexible in response to individual needs, particularly in this case when we were working with young people who had experienced, and in some cases were still living through, very difficult experiences.

How the workshop will inform the review

Two unifying themes of the discussion were the importance of the role of schools (even in regards to extended absence) and the need for support with practical life skills. The young people discussed how attitudes of teachers, institutional (in)flexibility, and (lack of) support at major transition points had been key barriers or facilitators to helping them feel supported through ACE trauma.
We are currently analysing primary qualitative UK studies in light of the themes arising from the workshop, with particular emphasis on the kinds of outcomes young people deemed to be important and the kinds of support that they highlighted which would help them to thrive.
The findings will be relayed to the Department of Health and Social Care and point to the need for them to work more closely with the Department of Education in their policy response to ACEs.
This is particularly relevant as the 2017 Green Paper sets out a vision to place schools at the foreground of mental health provision for children and young people (albeit by 2025).

Next Steps

As we near the final stages of the review, we are keen to re-engage with young people to verify the relevance of our findings across the different ACE populations and to the current UK context. There is also strong potential for further consultation with young people on the findings of the qualitative strand of the review, and for stakeholder events also including academics, practitioners and third sector organisations in order to reflect on or possibly to help disseminate findings.

About the authors

Dr. Louca-Mai Brady is an independent research consultant and a Research Associate at Kingston University and St George's Joint Faculty of Health, Social Care and Education. Her research interests include children and young people's involvement in health and social care research, policy and services and research with children and young people who are 'less frequently heard'.

Sarah Lester is a Research Officer at EPPI-Centre. She is interested in conducting systematic reviews in the areas of mental health and social care and involving stakeholders in research processes.

This research is funded by the NIHR Policy Research Programme. Views expressed are those of the authors and not necessarily NIHR or the Department of Health and Social Care.

Bibliography

Allen, M., and Donkin, A. The impact of adverse experiences in the home on the health of children and young people, and inequalities in prevalence and effects. London: Institute of Health Equity: University College London, 2015.

Bellis, M., Hughes, K., Leckenby, N., et al. National household survey of adverse childhood experiences and their relationship with resilience to health-harming behaviors in England. BMC Medicine. 2014; 12, 72. https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-12-72

Brady, L., Templeton, L., Toner, P. et al. Involving young people in drug and alcohol research. Drugs and Alcohol Today 2018; 18 (1): 28-38. https://doi.org/10.1108/DAT-08-2017-0039

CDC. Centers for Disease Control and Prevention. Violence Prevention: ACE Study. https://www.cdc.gov/violenceprevention/acestudy/about.html (accessed 19.07.18)

Jamal, F., Langford, R., Daniels, P., et al. Consulting with young people to inform systematic reviews: an example from a review on the effects of schools on health. Health Expectations. 2014; 18 3225-3235. https://doi.org/10.1111/hex.12312

Kessler, R., McLaughlin K., Green J., et al. Childhood adversities and adult psychopathology in the WHO World Mental Health Surveys. The British Journal of Psychiatry. 2010; 197(5): 378-385. https://doi.org/10.1192/bjp.bp.110.080499

Oliver, K., Rees, R., Brady, L., et al. Broadening public participation in systematic reviews: a case example involving young people in two configurative reviews. Research Synthesis Methods. 2015; 6(2):206-217. https://doi.org/10.1002/jrsm.1145

Parsons, S., Thomson, W., Cresswell, K. et al. What do young people with rheumatic conditions in the UK think about research involvement? A qualitative study. Pediatric Rheumatology. 2018; 16 (35). https://doi.org/10.1186/s12969-018-0251-z

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Involving young people with lived experience of adverse childhood experience (ACEs) in a systematic review

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Enthusiasm for public and patient involvement (PPI) in research is gaining momentum. But how can stakeholders be involved in a review process? What ar...

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Evaluation of Young People's Advisory Group (Brady et al. 2023)

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Evaluation of Young People's Advisory Group (Brady et al. 2023)

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Research Involvement and Engagement 9, Article number: 11 (2023) Cite this article

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Abstract

Background

Children and young people's (CYP) involvement is an increasing priority in UK healthcare and in heath research, alongside recognition that involving CYP in research requires different considerations to involving adults. Underpinned by children's rights and a co-production ethos this paper, co-authored with young evaluators, explores the learning from a co-produced evaluation of eyeYPAG, a young persons' research advisory group (YPAG) for eye and vision research based at Moorfields Eye Hospital, London, UK.

Methods

A team of young evaluators, supported by the eyeYPAG facilitator, conducted focus groups and online surveys with YPAG members, their parents and carers, researchers, group facilitators and funders. Qualitative data was analysed using a collaborative reflexive thematic analysis approach. Quantitative data, limited by the small number of participants, was analysed in Excel and reported as descriptive data.

Results

CYP valued the social and creative aspects of the group as well as learning about research and developing skills and confidence. Learning was a two-way process, with both researchers and facilitators reflecting on how much they had learnt from working with the YPAG. All participants talked about the importance of impact, feeling that CYP are making a difference to research, as well as CYP's right to be involved. Effective planning and facilitation were key to the success of the group, in relation to accessibility and the development and delivery of sessions both online and in-person. Resourcing and administration were key challenges to this, as was engaging researchers who were not already converted to the public involvement cause. As the nature of a YPAG is that it primarily focuses on advising researcher-led projects, co-production was identified as something that the group was 'working towards', including through this evaluation. Co-producing with CYP involves building up knowledge, confidence and acknowledging power dynamics.

Conclusions

Co-producing an evaluation enabled us to learn about the benefits and challenges of involving CYP in research, as well as how to involve them in the development of that evidence. An ethos of co-production and children's rights helped to shift the balance of power and develop more engaging and inclusive ways of working.

Plain English summary

Children and young people (CYP) have a right to be involved in things that affect them, including research. There is growing interest in children and young people's involvement in health research in the United Kingdom (UK), as well as understanding that what works for CYP is often different to what works for adults. This paper presents an evaluation of the Young Person's Advisory Group (YPAG) at Moorfields Eye Hospital in London. Evaluation uses research methods to find out how well a service or project is working and meeting the needs of those who use it, and how to improve things that could be better. A group of young evaluators, supported by adult researchers, designed and ran the evaluation; three of the young evaluators also helped write this paper. In our evaluation we used focus (discussion) groups and online surveys with young group members, their parents and carers, researchers who had worked with the group, the group's facilitators (adults who help manage the group) and funders. We found that group members valued the social and creative aspects of the group as well as learning about research and developing skills and confidence. Learning was a two-way process, with both researchers and facilitators talking about how much they had learnt from working with the YPAG. All participants talked about the importance of feeling that CYP are making a difference to research, as well as of CYP's right to be involved. Planning and support were important to the group working well, but we found that having the money and time to do this well was not always easy. And, while lots of researchers were keen to work with the group, and talked about how this had helped their research, we need to do more to engage researchers who have yet to be convinced. We also found that, while we wanted to 'co-produce' the group and share power for all big decisions, this was something we had to work towards, especially when group members were young and/or new to research and involvement. Co-producing an evaluation helped us to learn about the benefits and challenges of involving CYP in research, as well as how to involve them in evaluating that involvement.

Peer Review reports

Background

Involving children and young people in research

Involving those who are the focus of health, public health and social care research has been found to have a positive impact on what is researched, how research is conducted, and the impact of research findings on services and in the lives of those involved [ 9, 31]. By making use of people's knowledge, lived experience, and networks, public involvement in research helps to make it more relevant and useful to the end-users and ultimately leads to better services, treatments and care [ 32]. There is an expectation inherent in the UK National Health Service Constitution "that patients, service users and the public participate nationally and locally in the development, implementation and accountability processes of health and social care policy and services" [ 11], p. 2). Statutory guidance outlines how health and care systems should build positive and enduring partnerships with people and communities in order to improve services and outcomes, including engagement, co-design and co-production [ 21].

The United Nations Convention on the Rights of the Child (CRC): [ 36] states that all children have a right to the highest possible standards of both healthcare and to have a say in matters that affect them. This can be at the level of individual decision-making (CYP's participation in decisions that affect their own lives) and at a more strategic level (e.g., involvement in service development, evaluation and research). The CRC-informed understanding that children should be involved in decisions which affect them is increasingly reflected in law, regulation, policy, and research guidance. Further, Article 13 of the CRC states that children have the right to seek, receive, and impart information and ideas of all kinds. The realisation of children's participation rights requires their translation into policy and practice, as well as CYP's participation in conceptualising and realising these rights [ 30]. Children's rights have been reflected in CYP's involvement becoming an increasing priority in UK healthcare [ 3, 20, 38] and increasing interest in CYP's involvement in health, public health and social care research (e.g. (e.g. [ 5, 6, 7, 14, 23, 26, 27, 34]). This paper is underpinned by considerations of both impact and a rights-based approach in which CYP were involved throughout the process, including the development of this article.

Co-production

While there are debates about both definitions and practice of co-production (e.g. [ 2, 25, 29]) in UK health and social care research it is generally understood to be "an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge"[ 22], p. 1). It is something which "brings together different forms of lived or living and learnt (personal and professional) knowledge, understanding, and experience, for better outcomes and mutual benefit" [ 10].

From the start we sought to develop our young people's advisory group (YPAG) with a co-production ethos, while acknowledging that co-production can be particularly ethically and pragmatically complex when working with CYP [ 24]. Unequal power dynamics exist between adults and CYP [ 18], plus a young person's advisory group by its very nature is focused on advising researcher-led projects, rather than co-producing research. In practice therefore, a 'coproduction ethos' for us meant seeking opportunities to co-produce as well as advise on research and working together to develop a group shared identity [ 12, 19].

Children and young people's involvement in practice

As public involvement in UK health policy tends to focus on adult input, with services for CYP seen as the 'poor relation' to adult services within the National Health Service [ 5], so the discourse on public involvement in health and social care research also tends to focus on adults [ 6]. Involving CYP often requires different considerations to involving adults [ 7] including availability (e.g. around school terms and times), consent and gatekeeping and development of age-appropriate and accessible materials and activities. The dominant model for CYP's involvement in health and social care research in the UK is the YPAG [ 6], and this is the approach we chose to use when planning how to involve CYP in paediatric research at Moorfields Eye Hospital. The YPAG model allows a group of CYP to develop an understanding of research issues and processes through practical experience and training. YPAGs located within institutions, like eyeYPAG, also provide a convenient way for researchers to get input from CYP on a one-off or ongoing basis by attending YPAG meetings supported by experienced facilitators. Thomas et al. [ 35] discuss some of the ethical and methodological complexities in practice. For example, assumptions which can be made about CYP's abilities to understand and make useful contributions to research, or the need for CYP to be protected from harm, which can then override their right to choose whether or not to be involved. In our experience, and the growing body of literature cited throughout this paper, it is entirely possible, with careful consideration of age-appropriate methods, for CYP to make meaningful contributions to complex research studies. This paper explores the learning from our evaluation of the eyeYPAG on how best to do this. Despite the growing evidence base (see ' Involving young people in research' above, Brady and Preston [ 7] found that reporting of CYP's involvement in research is still patchy and inconsistent, and that more needs to be done to provide robust evidence of benefits and impacts, and the realities and challenges of CYP's involvement in practice. We therefore wanted to evaluate our YPAG and share learning from this process, in the hope that it will be helpful to others working to involve CYP in research as well as to those interested in public involvement and engagement more generally.

The GRIPP2 checklist for reporting public involvement in research [ 33], this paper outlines the findings from our co-produced evaluation of the eyeYPAG. In co-authoring this paper with young people, we also bore in mind the suggestion by Scholz and Bevan [ 28] to go beyond the requirements of the GRIPP2 checklist and engage in reflexive research practices with public participants (in this case young co-evaluators). So, this paper was developed collaboratively with the young co-authors, who helped plan the paper and reviewed and contributed to drafts.

Young co-authors perspectives: why is it important to involve CYP in research?

eyeYPAG

eyeYPAG is a YPAG for eye and vision research based at Moorfields Eye Hospital ( https://generationr.org.uk/eye-ypag/). eyeYPAG is part of a wider national network (Generation R) made up of local YPAGs across the UK; the European Young Persons' Advocacy Group (eYPAGnet; www.eypagnet.eu), a virtual consortium of YPAGs that supports the involvement of CYP in European clinical trial design and health research and the International Children's Advisory Network (iCAN; www.icanresearch.org); a worldwide consortium of children's advisory groups.

ADN and JM, with support from LMB, recruited CYP through their existing networks, focusing initially on CYP who had participated in research at the Children's Eye Centre. This included CYP with eye and vision conditions and others with an interest in eye and vision research, including siblings and those who had participated in studies as 'healthy volunteers'.

In the group's first year (March 2019-February 2020) the group met 5 times, on a Saturday for 4-5 h including breaks, at or near the Moorfields Children's Eye Centre with the aims of:

In the second year eyeYPAG changed to meeting online due to the COVID-19 pandemic, with meetings held on Zoom on 8 Saturday mornings between March 2020 and June 2021 (when the evaluation was conducted). We found that online meetings needed to be shorter, as it is harder to be interactive and concentrate online, so these meetings were normally about two hours long.

We wanted to evaluate the eyeYPAG so that we could learn from everyone involved what has been good about the group, what difference we have made and how we can develop and improve in the future. This article outlines how a group of eyeYPAG members co-produced the evaluation [ 1] with the group's facilitator, Louca-Mai (LMB), and what we learned about the group, young people's involvement and co-producing an evaluation of public involvement.

Methods

Aim, design and setting of the study

Our project was a co-produced self-reflective process evaluation [ 16].

Our aims (agreed at our first meeting):

To find out what difference the eyeYPAG has made to research, and to group members

To understand what has worked well and what could be improved after the first two years of eyeYPAG

To use what we learn to help improve and plan for the future of the group, and help other people interested in involving CYP in research

Participants and process

21 CYP were involved in eyeYPAG since the group started in March 2019, and at time of the evaluation the group had 14 active members aged between 10 and 18 (11 female and 3 male). 7 group members had eye and vision conditions, 3 were siblings of group members with eye and vision conditions and the remainder joined because they had taken part in clinical trials and/or have an interest in eye and vision research. All YPAG members were involved as evaluation participants through participation in focus groups and/or completion of an online survey. We also collected data from parents and carers of YPAG members, researchers who had worked with the group, our funders and the group's facilitators (who also co-authored this paper).

Once we had developed our aims we decided on our methods and developed recruitment and data collection tools during our online meetings using Jamboard to post ideas and Googledocs to finalise the questions for the surveys and focus group 'topic guides', and agreed who was going to ask which questions in the focus groups. As the project took place during the COVID-19 pandemic all data collection took place online in March-May 2021 through:

How we worked together

We met regularly during the project on Zoom, shared information and ideas by email and worked on project documents in between meetings on Googledocs. LMB did some training sessions in these meetings on research methods and ethics and all the big decisions about the project were made together, with young evaluators deciding what they wanted, and were able, to get involved in. We kept a record of how many hours we all worked on the project so that everyone could be paid fairly for their contribution at the end (LMB was paid to work on the project as part of her job and the young evaluators were paid an hourly rate).

Analysis

We recorded and transcribed the focus group conversations and then analysed this material and qualitative data from the online surveys using a reflexive thematic analysis approach [ 8]:

Familiarisation and collaborative data coding: We read through all the data we had collected and made notes about our ideas. Then we went through the transcripts and qualitative survey answers and coded things that seemed relevant to our research questions. We did this in different ways that worked for us - e.g. by highlighting words which related to each code in a different colour in a transcript, or by creating a table to organise data related to different codes.

Theme development and review: We got together online to decide what our initial themes would be, based on the coding we had done, grouping together codes which seemed to be related or linked (Fig. 1). We then went back to the YPAG to ask group members what they thought about the themes and codes we had identified (workshop 2 above).

Theme refining, defining and naming: We asked LMB to do the rest of the analysis, so she put all the data in NVivo qualitative analysis software, using the coding the group had done and working with the themes we had identified. We reviewed the themes and talked about the analysis in our meetings.

[Figure 2: Research responses to questions on stages of research YPAG were involved]

example collaborative analysis using Google Jamboard

Research responses to questions on stages of research YPAG were involved

Quantitative analysis was limited by the small number of participants, and so we analysed this in Excel and reported descriptive data.

Results

This section outlines our findings, organised by our main themes: the benefits of involvement, how the YPAG worked 'in practice', what is needed to support the group (facilitation) and planning for the future.

Benefits of involvement

Benefits discussed by participants included a sense of belonging, gaining knowledge and skills (learning), making a difference (impact) and an awareness of children's rights and voice.

Belonging

YPAG members, in the survey and focus groups, and parents and carers who responded to the survey. talked about joining the group in order to meet other CYP with similar interests or experiences, or finding this a benefit of being a member. During the focus group facilitated by the young evaluators facilitators also reflected on how the group had bonded really well. YPAG members talked about valuing how we work together, reflecting the work we have done as a group on our 'shared identity', as well as advising on research projects:

Group members also valued the wide age range of the group, as did facilitators:

Learning

YPAG members members valued learning new things:

Knowledge and skills which parents and carers said in the survey that their children had gained included:

Facilitators in the focus group reflected on both the value of sharing knowledge and teaching CYP and, conversely, how much they had learnt from YPAG members, both in terms of their perspectives on research and how to pitch their involvement:

Impact: young people's perspectives

In the focus groups YPAG members discussed the importance of feeling that they were making a difference to research:

In terms of impact on CYP of being group members, in the survey CYP (n = 10) were asked to rate their experience of the group in relation to the following statements (Table 1):

Table 1 YPAG members responses to survey questions on experience of being a group member

In open text responses, YPAG members said that things the group did well include:

"They allow everyone to have a voice and make everything accessible to everyone."

"It's a fun, interactive and very interesting group."

"Even in lockdown, we've still been pretty good at working together and getting to know each other better, so it's not as lonely, and we know that our voices are valued more, and that people are actually going to listen."

Impact: adult perspectives

All researchers who took part in the focus group or completed the survey reported some impact from the YPAG's input into their research. This included changes to methodology, research protocols, recruitment and data collection tools:

"We have taken some concrete suggestions on board, and made tweaks to tests... It also provided helpful supporting material for at least one grant application and one peer reviewed paper" (researcher)

"There were things that the group told us they wanted to change I had never thought about... It really opened my eyes and gave me a different perspective... it was incredibly helpful." (researcher)

"[Involvement] makes it much more suitable for the children and young people who take part in the study ... [and] that then just makes it more successful in the end, either in the numbers of people willing to take part, because it's an appropriate project for children, or having a better experience while they're taking part." (researcher)

"I think it's actually changed, not the research, but me as well... learning what children or young people can say, how much they can give to research, has actually set me up quite early on in my career to make sure that I continue to [work with young people and] make the research better." (researcher)

The feedback from researchers about coming to eyeYPAG meetings was overwhelmingly positive, with comments about 'invaluable advice', 'insightful comments and suggestions' and 'excellent engagement'. This was echoed by funders in their survey responses:

They went on to consider success in terms of impact to research, as described above, and how, from their perspective, they had achieved their aims and aspirations when setting up the group regarding teaching, giving CYP a voice, and improving and informing research. Facilitators reflected in their focus group on what they considered the a success of developing a group informed by co-production principles:starting with open minds and high aspirations, but acknowledging that with such a young cohort (some aged 8-9 years old at the start) with little prior experience of research or involvement, that an approach of 'working towards' co-productionwas required.

Facilitators discussed the group's impact in terms of dissemination:

Children's voice and rights

As discussed in ' Background ', CYP have a right to be involved in things that affect them, including research. Participants from all cohorts mentioned this.

"I wanted to help young people get their voices heard, especially in a healthcare environment. I thought that I could make a difference." (YPAG member)

"It's incredibly unethical not to allow [young] people to have a voice in how research that involves them is being undertaken." (researcher)

"In healthcare, we always have to stand up for children and young people, and I feel that has to do with them not having a voice and their parents not having a very loud voice. Whereas, other patient groups are bigger and more articulate." (facilitator)

YPAGs in practice

When discussing the reality of involvement adults talked about the importance of planning and support, and of considering accessibility, particularly when working with a group which included CYP with eye and vision conditions. Participants highlighted the importance of allowing time and space for creativity and how the COVID-19 pandemic had created opportunities to do involvement differently, as well as presenting challenges.

Involvement in different stages

Participating researchers said that they came to work with eyeYPAG because they already knew about the group or had been told about the group by someone who knew them. Many came to the group in the planning stages of their research:

On-going involvement was encouraged, and several researchers worked with the group more than once and were keen to come back to the group later on in their projects. Two of the facilitators and co-authors of this paper (JM and ADN), also work with the group as researchers:

Planning and support

Researchers and facilitators highlighted the importance of thoroughly planning sessions before coming to meetings.

Researchers valued the support they had had from the group facilitators to do this.

Accessibility

Researchers also valued the personal and practical experience of the group of having, or knowing about, eye and vision conditions and research. In a group with a range of visual impairments and other access needs accessibility was an important planning consideration:

Space for creativity

Alongside working with researchers, an aspect of eyeYPAG meetings which group members really valued was creative activity:

Creativity was also valued by researchers:

"We had an activity where we all drew what we think eyepatches should look like [using Zoom whiteboard in an online meeting, see Figure 3], and I felt that that was really good at helping the young people to contribute what they thought... the creativity was something that I've not seen before and was really impressed with."

Screenshot of Zoom whiteboard from online meeting

Top tips

' Top tips " from researchers and facilitators for planning a YPAG meeting:

COVID-19

The need to move YPAG meetings online during the COVID-19 pandemic presented challenges including accessibility, keeping members engaged and the need to adapt quickly to new ways of working:

The solution was to reflect together on how best to make online meetings as engaging and accessible as possible, as it was a learning process for all of us. Our members co-authored a blog post and presented at a UCL Centre for Co-production network meeting on our learning [ 12]. While many group members said that they missed the social and fun aspects of meeting in person, and that online meetings could be less interactive and engaging, the preference of most group members and adults going forward, was for a mix of online and in person meetings.

Young co-authors perspectives: lessons from the evaluation on how best to involve CYP in research

Behind the scenes: facilitating a YPAG

As discussed above, support and facilitation was key to the success of the group for both young people and researchers.

Enabling factors included the role facilitation played in supporting researchers:

Researchers also reflected on the shared agreements film co-produced by the group [ 19] which they found a really helpful way to understand eyeYPAG's approach.

Creative and social activities were also a key element of successful facilitation, as discussed above, both to build group identity and make the involvement process more engaging and fun. Funding for tablets also helped make documents more accessible for group members during in-person meetings, as well as sending documents out in advance for online meetings so that they could be printed or put on a device at home if needed:

Challenges included resourcing and administration:

While the researchers who took part in the focus group and survey were enthusiastic and engaged, others had taken more convincing:

Future direction

After two years group members and facilitators were of the view that a refresh of the group was needed, as some of the original group members had left or would do so in the next few years as they began to move on and 'age out'. It was felt that this needed a good application process to both involve CYP with a range of interests and experience, and to get an understanding of interests and access needs. More engagement was also needed within the hospital:

It was felt important to involve current members in developing a recruitment strategy and materials. In addition, the facilitators discussed the need to think beyond the YPAG model and consider other ways to involve CYP who may not be interested in, or able to, have ongoing involvement or come to meetings in a hospital (e.g., through working with schools or services). But thought was also needed about how to integrate new members into the group, and how existing group members could support or mentor new ones.

Finally, another important challenge for facilitation is staffing. The lead facilitator (LMB) left for a new role soon after this evaluation was completed, and for almost a year afterwards there was nobody with dedicated time to take over this role, meaning that other facilitators had to manage this in addition to their regular jobs. So often YPAGs, and public involvement more generally, rely on one or two people who take on the role because it is something they care about with little or no funded time to do this and/or a lack of job security. When people leave this can then create loss of knowledge and continuity.

Discussion

Learning from the evaluation

We wanted to evaluate eyeYPAG so that we could learn from everyone involved what has been good about the group, what difference we have made and how we can develop and improve in the future. We found that the eyeYPAG has made a difference to research and to group members. We learnt that while we aspired to, and largely achieved, a 'coproduction ethos' for the group, there is still work to be done. Whilst it was great that we had no 'sometimes' or 'never' answers (see Table 1), we will continue to focus on making sure the answers are 'mostly' or 'always' for everyone.

Recommendations we made at the end of our evaluation report:

Resume in-person meetings alongside some online meetings

More creative sessions

Make sure all research sessions are engaging, accessible and interactive

Refresh the group membership

Develop guidance/top tips for researchers coming to meetings

Support group members to set personal goals (e.g. write a blog post, give a presentation) and make a plan for how to achieve these

Continue to focus on and develop our 'coproduction ethos'

Let more researchers know about the group (e.g. make a promotional film)

Make sure we continue to evaluate and collect information on eyeYPAG and the difference it makes to research

Ask researchers to credit the group and, if possible, include them in publications

Think about the long-term future of the group, including getting included in more funding bids

Young co-authors' perspectives: being a young evaluator

Jasmine: I have learnt that is very hard to get people's honest opinion. There is a need to be respectful, but still encourage people to express their view. I benefited from widening my skills in this evaluation project, like interviewing skills, framing good questions to ask, and asking open questions. It would have been even better if we could have used more creative methods as well as standard surveys.

Rhianne: I learnt about managing a project, from planning to interviewing, making surveys, getting information out of the transcript. I benefited by getting a deeper understanding of research and by hearing other people's ideas and opinions. I would prefer to meet face-to-face for a longer session-having several online sessions took a long time, and I felt it was difficult to keep track, because school is so busy.

Eleri: I am so grateful that I was given the opportunity to be a young evaluator because I know that not everyone in is handed such a rewarding opportunity. Being someone who has dealt with eye issues from birth, it was extremely enlightening to learn about the process behind it all. Being a young evaluator meant that I learnt so much about eye research around the world but also local which for me was a very humbling experience. I have gained many life skills and met many amazing and influential people! If I had to change anything I think I would included more face to face meetings but I understand that it was hard due to the world only just starting to recover from COVID-19.

Implications of the findings

While CYP's involvement in UK health research is an area of growing interest, they are still often the 'poor relation' in both health services and research [ 5]. The reporting of CYP's involvement in research is patchy and inconsistent, and more needs to be done to provide consistent and comparable evidence of these benefits and impacts, and the realities and challenges of involvement in practice [ 7]. Our evaluation highlights important learning regarding both the process and impacts of involvement (how CYP are involved and what difference this makes). Impacts include benefits for research such as improved proposals, plans and recruitment and data collection tools; as well as YPAG members, and the adults who worked with them, gaining valuable skills and experience. But other, less tangible, benefits were equally valued including a sense of belonging and the group being an inclusive and supportive space. Meaningful involvement is not just about CYP providing advice and support for researchers, though this is of course important, but equally so is the need to do this in ways that work for CYP, embedding accessibility, creativity and building group identity.

As discussed in the introduction, it is entirely possible, with careful consideration of age-appropriate methods, for CYP to make meaningful contributions to complex research studies. The challenge is not that the research is 'too difficult' for CYP to understand, but that the research materials and associated activities, explanations and format are not sufficiently clear, accessible or succinct. A key role of the YPAG facilitator is to support this process as a mediator or translator: working with researchers to ensure that their material is age-appropriate and sufficiently engaging, alongside supporting CYP to ensure that their input is relevant and useful for the research.

Skilled facilitation, and time and resources to do this well were identified as key to the success of the group. This echoes an emerging literature on the importance of facilitation in effective public involvement, including as a catalyst for discussion, reflection and relationship building [ 15] and in the process of providing feedback [ 17]. But investment in facilitation, as well as recognition of the skills and expertise involved, is also essential [ 37]. The fact that the YPAG included both young people with eye and vision conditions as well as siblings and participants without eye and vision conditions brought a range of diverse perspectives which YPAG members, as well as researchers, really valued. But this again needed skilled facilitation to manage as well as establishing clear ground rules about valuing different perspectives and experiences.

From the start we sought to develop eyeYPAG with a co-production ethos but, echoing Pavarini et al. [ 24] found that the reality of co-producing with CYP can be complex. A young person's advisory group by its very nature is focused on advising projects led by adults, alongside the challenges of co-producing something with children (some as young as 8 at the start of the project) who had no prior knowledge or experience of research, public involvement or co-production. We were aware that what works best for one child, young person or group does not necessarily work for all and, with the aim of actively 'working towards co-production', from the outset discussed and reviewed with the YPAG when, where and for how long we met as well as what we did in the meetings. We identified opportunities to co-produce as well as advise on research, evolving the way the group worked together and developing their shared identity [ 12, 19]. Co-producing the evaluation also involved some shared learning, particularly as the COVID-19 pandemic meant that all the work was done online. While convenient in many ways, this meant that most of the work happened in meetings, with some work in between using online file-sharing. The young co-evaluators were often busy or unavailable in between and delegated a lot of the day-to-day work on the project to LMB, particularly in the analysis and reporting stages. But, as with authoring this article, keeping the co-production values of sharing power and responsibility at the centre of our approach, does not mean everyone doing everything. The young co-researchers were given opportunities to be involved at every stage, in ways that worked for them. But it is important to acknowledge the realities of young people's lives, and educational and other commitments mean that their capacity and availability is often limited and can fluctuate. For co-production to be feasible in reality this needs to be acknowledged, with opportunities for involvement to fluctuate, echoing the idea of 'pockets of participation' [ 13]. Similarly, taking a report co-authored by young people and aimed at a young, as well as professional, audience and developing it to fit the conventions and expectations of an academic journal also requires a balance of effort and negotiation of roles and responsibilities. In this case the lead and second author carried out much of the drafting following some initial planning meetings with all authors, with other credited authors involved in commenting on drafts and contributing the material in text boxes.

YPAGs provide a convenient way for researchers to get input from CYP on a one-off or ongoing basis but they are not, as discussed in the introduction, the only way to involve CYP in research [ 6]. Indeed, there is an argument for more inclusive approaches in order to involve CYP who are marginalised and less often heard [ 4]. While not a key focus of this evaluation, the project did highlight the possibility of considering other ways to 'reach out' to diverse CYP, for example through engaging with schools, youth services, patient groups and organisations working with CYP (e.g., visual impairment and disability charities) alongside a 'core' YPAG. So, for example involving CYP with lived experience of particular conditions or treatments in relevant studies. Some of these CYP may then want to go on and join the YPAG, but some may prefer one-off or limited involvement. The key principle is to evolve the YPAG in collaboration, and if possible co-produced, with both existing YPAG members with others who may be interested in becoming involved.

Limitations of the study

This was a small study with a limited and self-selecting sample; staff and CYP's capacity also limited the scope of the project. YPAG members were sent several reminder emails and messages, as well as being reminded about the evaluation survey in meetings. But it was more difficult than expected to get all group members to take part in the survey, as we were all working remotely due to the COVID-19 pandemic, and we were doing the research during exam time. It is not possible to make wider generalisations about CYP's involvement in health research, but we hope that it provides some useful lessons and areas for further study, as well as providing a worked example about how young people can be involved in evaluating their involvement in research.

Conclusions

This evaluation builds on the growing evidence base on CYP's in UK health and social care research outlined in Background, not least by involving. them in the development of that evidence, including co-authoring this article. In our view any article on CYP's involvement is incomplete without their perspectives.

Establishing the group with an awareness of co-production principles and a children's rights-based approach was essential to starting to shift the balance of power and challenge traditional ways of working. There were no experts-we all brought knowledge and expertise/experience but focused on learning together, not least during the COVID-19 pandemic when we had to rapidly develop new ways of working together.

While the focus of this paper is on the involvement of CYP in health research in the UK, Many of the issues raised are relevant to the involvement of adults as well as CYP, and to organisations beyond the UK supporting public involvement in research. Support and facilitation were key to the success of the group for both CYP and researchers and this is an area that needs further research. Further research is also needed on how, when and where CYP are involved in health research, how involvement can draw on other approaches and disciplines to develop more inclusive and diverse approaches, and the ethical issues raised by involving (or not involving) CYP in research.

Availability of data and materials

The datasets generated and/or analysed during the current study are not publicly available due to risks of compromising confidentiality and individual privacy, particularly regarding child participants. However further information data is available in the published report [ 1] and data is available from the authors upon reasonable request and with permission of the NIHR Moorfields Biomedical Research Centre.

Abbreviations

CYP:

Children and young people

PPI:

Patient and public involvement

YPAG:

Young people's (research) advisory group

References

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Acknowledgements

The authors would like to acknowledge Elena Ashton and Berkley Barnicoat, who did not contribute to the development of this article but were part of the young evaluator team who undertook this project and are named as co-authors in the project report [ 1]. We would also like to thank all the evaluation participants and eyeYPAG's funders: Moorfields Eye Charity, National Institute for Health Research Moorfields Biomedical Research Centre and Santen, who also funded this evaluation. Thank you also to the GenerationR alliance of YPAGs in England for your support.

Authors' information

LMB is a Senior Research Fellow at the Centre for Public Health and Community Care (CRIPACC), University of Hertfordshire, where her work includes leading the university's young people's research advisory group (Herts YPAG) and supporting and advising the involvement of CYP's involvement in a range of research projects. She has worked in the field of children and young people's involvement for many years, as a researcher, facilitator and advisor. Her research interests include young people's participation in health and social care research and services, disability and qualitative and participatory research methods. https://go.herts.ac.uk/loucamai_brady. Twitter: @Louca_Mai.

JM is Children's Research Nurse. For the past six years she has worked at Moorfields Eye Hospital, in the NIHR Moorfields Clinical Research Facility and Richard Desmond Children's Eye Centre, caring for children and young people who take part in eye and vision research. JM is also a part time PhD student at Kings College London. Her project, called Ci2i Project, is funded by NIHR Moorfields BRC and aims to co-design interventions to improve the experiences of children and young people who take part in eye and vision research, using Experience-based Co-design. Her research interests include patient/ research participant experience, co-production, qualitative participatory methods, the involvement of children and young people, quality improvement and paediatric ophthalmology. JM is a co-founder and co-facilitator of the Moorfields Young Persons' Advisory Group for Research (eyeYPAG). Twitter: @Jacq_A_Miller.

EMR, JN and RN are founder and current active members of the eyeYPAG and were part of the team of young evaluators involved in the project.

ADN is a co-founder of the eyeYPAG and a consultant in children's eye health at Moorfields Eye Hospital in London. She is also the clinical trials lead for research with children and young people at Moorfields and honorary clinical associate professor for paediatric ophthalmology at University College London. Her research interests focus on how to make research more accessible for children, young people and parents/carers, how to slow the progression of short-sightedness, finding better ways to treat amblyopia ("lazy eye"), and how best to treat eye surface inflammation in children and young people.

Funding

EyeYPAG is funded by Moorfields Eye Charity, NIHR Moorfields Biomedical Research Centre and Santen Pharmaceutical Co. Ltd. Santen also funded the evaluation discussed in this paper.

Author information

Author notes

1. Louca-Mai Brady

Present address: Centre for Research in Public Health and Community Care School of Health and Social Work, University of Hertfordshire, Hatfield, AL10 9AB, UK

2. Eleri McFarlane-Rose, Jasmine Noor and Rhianne Noor are young co-authors

Authors and Affiliations

Richard Desmond Children's Eye Hospital, Moorfields Eye Hospital, 3 Peerless Street, London, EC1V 9EZ, UK

Jacqueline Miller, Eleri McFarlane-Rose, Jasmine Noor, Rhianne Noor & Annegret Dahlmann-Noor

Contributions

LMB was lead facilitator of the eyeYPAG, led and managed the evaluation discussed in this paper and led the drafting and revisions of this article. JM was a major contributor to both the evaluation and drafting this manuscript. EMR, JN, RN and ADN, helped plan the paper and reviewed and contributed to drafts. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Louca-Mai Brady.

Ethics declarations

Ethics approval and consent to participate

NHS ethics approval was not required as this was a service evaluation. This project was approved by Moorfields Eye Hospital as a Service Evaluation (ref: 1091).

Consent for publication

Informed written consent was obtained from all evaluation participants for the use and publication of data. Additional consent for publication has been obtained from young co-applicants and their parent or legal guardian.

Competing interests

ADN has served on advisory boards for Santen, Thea and SightGlassVision, has produced and presented educational material for Santen and CooperVision, and has contributed to family focus groups for Santen and Novartis. None of these activities had any relationship to the work presented here. None of the other co-authors have any competing interests.

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Brady, LM., Miller, J., McFarlane-Rose, E. et al. "We know that our voices are valued, and that people are actually going to listen": co-producing an evaluation of a young people's research advisory group. Res Involv Engagem 9, 11 (2023). https://doi.org/10.1186/s40900-023-00419-4
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Keywords

Public involvement

PPI

Co-production

Young people

Paediatric research

Evaluation

Eye and vision research

Ophthalmology

# data[].attributes.attachment_link.title
"We know that our voices are valued, and that people are actually going to listen": co-producing an evaluation of a young people's research advisory group - Research Involvement and Engagement

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Background Children and young people's (CYP) involvement is an increasing priority in UK healthcare and in heath research, alongside recognition that involving CYP in research requires different considerations to involving adults.

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Co-production to understand online help-seeking for young people experiencing emotional abuse and neglect: Building capabilities, adapting research methodology and evaluating involvement and impact (Bennett et al. 2022) 

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Co-production to understand online help-seeking for young people experiencing emotional abuse and neglect: Building capabilities, adapting research methodology and evaluating involvement and impact (Bennett et al. 2022) 

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How do we know what works? Evaluating data on the extent and impact of young people’s involvement in English health research (Brady and Preston 2020)

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How do we know what works? Evaluating data on the extent and impact of young people’s involvement in English health research (Brady and Preston 2020)

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The case for children and young people's involvement in health research has been well documented, but less attention has been paid to the experiences and impact of involving children and young people rather than adults. This paper explores these issues in relation to a project undertaken for the James Lind Initiative on the availability, quality and reliability of existing data on young people's involvement in studies supported by the National Institute for Health Research (NIHR). The project found that there was no systematic way of getting reliable and comparable information about which young people are involved in health research in England, what form that involvement may have taken or the impacts of involvement. There is a need to better collate and disseminate evidence on young people's involvement in research, using both existing systems and processes, and the possible development of new metrics and measures. Not having this information risks children and young people's involvement continuing to develop in a piecemeal fashion. Further research is needed about how, when and where children and young people are involved in health research, and about the impact of involvement on research and on the children and young people involved.

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There is currently no systematic way of knowing which children and young people are involved in health research in England, let alone assessing what form that involvement may have taken or any impacts from involvement.

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There is scope to better collate, understand and disseminate evidence on the nature, extent and impact of children and young people's involvement in research, using both existing systems and processes, and the possible development of new metrics and measures.

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Further research is needed on how, when and where children and young people are involved in health research in England, and the impact of this involvement on research studies, research bodies and the children and young people involved.

Introduction

Background

Health research, as defined by the National Institute for Health Research (NIHR), is 'research which aims to improve the current and future health and care of the population' by 'providing research evidence to inform health and care practice' ( NIHR, n.d.). Public involvement in health and social care research refers to research 'carried out "with" or "by" members of the public, rather than "to", "about" or "for" them' ( Hayes et al., 2012). In other words, working with people with relevant lived experience in the design, delivery and dissemination of research, as opposed to them being involved as research participants, that is, as sources of data. This can take many forms, for example, 'working with research funders to prioritize research, offering advice as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants' ( INVOLVE, 2020). Involvement can take place at all stages of the research process, including: commissioning; management (for example, membership of a project steering committee); research design and the development of proposals; data collection and analysis; reporting (for example, co-authoring reports or lay summaries); and dissemination (for example, presenting at conferences or co-authoring journal articles). It can also be at different levels of power-sharing, including: one-off consultations seeking people's views on health research; collaboration (an ongoing partnership between researchers and members of the public/patients); co-produced research, in which power and responsibility are shared from the start to the end of a project; and user-led research (research that is actively controlled, directed and managed by service users/members of the public and their organizations) ( Brady and Graham, 2019).

Involving those who are the focus of health research has been found to have a positive impact on what is researched, how research is conducted, and the impact of research findings on services and in the lives of those involved ( Staley, 2009). By making use of people's knowledge, lived experience and networks, the argument is that researchers can provide more relevant, higher-quality research that is more widely communicated ( Barber et al., 2011; Stewart and Liabo, 2012). All publicly funded health research in the UK is now expected to have some element of public involvement ( Evans et al., 2014). In 2014, an independent panel conducted a review of public involvement in the NIHR, Breaking Boundaries, which led to a report entitled Going the Extra Mile ( NIHR, 2015). The report called for a new vision, mission and set of principles to underpin public involvement in research, and for public involvement in the NIHR to be focused on six common goals:

Opportunities to be involved in research are visible and seized on by the public.

It is standard practice for the public and professionals to work together.

The experience of patients, service users and carers is valued.

Public involvement is a required part of high-quality research.

Evidence of what works is easily available and can be put into practice (our emphasis).

The NIHR has maintained its global presence and influence for working with the public.

The role of the NIHR Clinical Research Network (CRN) is to provide support for researchers to deliver studies to 'time and target', and to provide the infrastructure to make research 'work' in the NHS. In April 2014, the NIHR CRN underwent significant reorganization intended to streamline and simplify the processes that support research delivery.

The NIHR CRN encourages researchers to involve the public in the early stages of research development. The CRN provides advice on public involvement, and works collaboratively with NIHR partners to ensure continuity for the patients and carers involved, so that they can share their insights throughout the research process.

But while the body of knowledge on the rationale, methods and contextual factors for public involvement has expanded over the past decade, the quality of reporting is often inconsistent, which limits understanding of how it works, for whom and why ( Staniszewska et al., 2017). A perceived lack of data to demonstrate the impact of involvement upon research ( Brett et al., 2014) has resulted in a drive to outline standards of good involvement practice ( UK Standards for Public Involvement, n.d.) and an increasing interest in measuring the impact of public involvement (for example, Evans et al., 2014; Wilson et al., 2015; Crocker et al., 2017).

The case for involving children and young people

The majority of children and young people involved in health research in the NIHR and elsewhere are between the ages of 8 and 21, so this is the age range generally implied in this article.

The case for children and young people's involvement has been well documented (for example, Percy-Smith and Thomas, 2010), and it is a popular concept in many health-care organizations ( Weil et al., 2015). There are two principal arguments for involving children and young people in health research: a rights-based moral argument that it is the 'right' thing to do; and an impact- or evidence-based argument that involvement has benefits for the children and young people participating, for research, and for the services and policies that draw on this research evidence ( Brady and Graham, 2019).

Public involvement is seen as a right when a group of people might be affected by the research topic, or 'as part of good governance in ensuring transparency of decisions and accountability in the use of public funds' ( Oliver et al., 2015: 206). The rights-based argument for children and young people's involvement centres on the United Nations Convention on the Rights of the Child (UNCRC; United Nations, 1989), which established international recognition that all children have the right to the highest possible standards of health care and the right to have a say in decisions that affect them ( Alderson, 2014). The UNCRC sets out children's rights in terms of both their protection and their participation in society, and 'asserts children's right to have a voice in decision-making, as well as rights to freedom of thought and expression' ( Percy-Smith and Thomas, 2010: 1). The key article relating to participation, Article 12, states that: 'States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child' ( United Nations, 1989).

The CRC-informed understanding that children and young people should be involved in decisions that affect them is increasingly reflected in law, regulation, policy and research guidance ( Franklin and Sloper, 2005). Furthermore, Article 13 states that children have the right to seek, receive and impart information and ideas of all kinds, and Article 24 states that they have the right to the best possible health and access to good-quality health care. The realization of children's rights requires their translation into policy and practice, as well as children and young people's participation in conceptualizing and realizing these rights ( Spronk, 2014). Children's rights have been reflected in increasing interest in children and young people's involvement in research (for example, INVOLVE, 2016; Powell and Smith, 2009; Brady and Graham, 2019), both as sources of data and - the focus of this article - through their active involvement in the research process.

The evidence-based argument centres on the idea that involving those who are the focus of health research has a positive impact on what is researched, how research is conducted, and the impact of research findings on services and in the lives of those involved ( Brett et al., 2014; Staley, 2009), as discussed above. Research that actively involves young people, if used to inform decision making or policy formulation, should lead to policies and services that reflect children's priorities and concerns ( Brady et al., 2018; Fleming and Boeck, 2012) and enhance the opportunity for optimal health outcomes ( Jamal et al., 2015). But less attention has been paid to the experiences and impact of involving children and young people than to the involvement of adults in research ( Brady and Preston, 2017; Bird et al., 2013; Wilson et al., 2015). While evaluation frameworks for involvement have been developed for adults, it is still unclear whether they can be used effectively with children and young people ( Parsons et al., 2017).

Children and young people's involvement in practice

Involving children and young people is not the same as involving adults, and it requires different considerations. Researchers and others can make assumptions about children and young people's abilities to understand and make useful contributions to research, or that their need for protection from harm overrides their right to choose whether or not to be involved ( Brady and Graham, 2019). In our experience, and the growing body of literature cited throughout this paper, it is entirely possible for children and young people to make meaningful contributions to even the most complex health research studies. The challenge is in having skilled facilitators who can provide children and young people with the support and training they need to make an informed contribution, and who can act as 'translators' to ensure that researchers communicate with children and young people in ways that work for them, and that children and young people's contributions are framed in ways that are relevant to the research in question (for example, see the GenerationR groups discussed below). Methods and techniques demonstrated to be effective in adult involvement cannot necessarily be translated to children and young people ( Bate et al., 2016). On a practical level, children and young people's availability tends to differ from that of adults (for example, they can only meet during school holidays or at weekends), they may be involved for shorter periods of time (for example, until they go off to further education or employment, or are no longer deemed to be a young person), and they are often dependent on adults to enable them to be involved (see 'Rights, power and control', below).

The dominant model for children and young people's involvement is through the forum of a young persons' advisory group (YPAG), which is also the focus of the project discussed in this article. GenerationR is a national YPAG made up of local YPAGs across the UK. Developed in 2006 by what was formerly known as the NIHR Medicines for Children's Research Network, it is a widely praised model for involving children and young people in the design and development of paediatric health research. Internationally, the European Young Persons' Advocacy Group (eYPAGnet; www.eypagnet.eu) is a virtual consortium of YPAGs that aims to support the development of new YPAGs within Europe, and to provide the necessary infrastructure to support meaningful and valued involvement of children and young people in clinical trial design and health research. The International Children's Advisory Network (iCAN; www.icanresearch.org) is a worldwide consortium of children's advisory groups that works to promote and develop greater global understanding about the importance of the paediatric patient and caregiver voice in health care, clinical trials and research.

But YPAGs are not the only model to involve children and young people, and recent studies have highlighted the need to develop more flexible, children- and young people-centred approaches ( Mawn et al., 2015) alongside more 'traditional' YPAGs as described above, which tend to be based in hospitals and/or academic institutions. This can be particularly helpful for researchers seeking to involve children and young people who are disadvantaged, seen as more vulnerable or otherwise less frequently heard (for example, Brady et al., 2018; Forsyth et al., 2019; Mitchell et al., 2019).

Rights, power and control

Children's rights are about more than children and young people's right to have a say in matters that affect them, as discussed above. How and when children and young people are involved is largely determined and controlled by adults ( Boyden and Ennew, 1997). The extent to which children and young people's involvement is active, authentic and ongoing in research depends both on the approach researchers choose to take, and whether they are able to create an environment in which children and young people feel comfortable to engage in open and honest dialogue on how they can best be involved ( Brady and Graham, 2019). The working relationships between adults and children and young people also need to be understood, and reported more fully to explore all participants' perceptions about the process and outcomes of involvement ( Dovey-Pearce et al., 2019).

Diversity and inclusion

In considering who is involved, it is also important to remember that children and young people are not a homogeneous group. Age and other aspects of social background, such as race and ethnicity, disability, social class, family background and use of services, 'intersect as aspects of who [young people] are, their social position, and what researchers need to consider in designing research approaches appropriate to the young people they wish to involve' ( Clavering and McLaughlin, 2010: 604).

There are disparities in the characteristics of children and young people likely to participate, the types of decisions they are involved in making, and the extent to which this involvement is meaningful and effective ( Cockburn, 2005; Percy-Smith, 2010). The mechanisms of formal involvement can privilege the already privileged ( Crowley, 2015), and the voices of children and young people deemed to be more 'vulnerable' are often absent from the literature on children and young people's participation in research ( Powell and Smith, 2009; Mawn et al., 2015). However, a growing literature (for example, Brady et al., 2018; Forsyth et al., 2019; Brady and Lester, 2018) has begun to address this by reporting on attempts to develop more inclusive involvement with 'less frequently heard' children and young people. As discussed above, YPAGs are the dominant model for children and young people's involvement in research, but YPAGs can be convened in children and young people's spaces, such as schools or youth centres, as well as children and young people coming into adult spaces, such as academic and/or clinical settings (for example, Brady et al., 2018; Dennehy et al., 2019).

Evidencing involvement

It is important to consider not just why, and how best, to involve children and young people in health research, but also how best to document this, as well as who is involved. The reporting of children and young people's involvement is patchy, inconsistent and often includes informal sharing of knowledge between practitioners in the field, rather than consistent collection of comparable data. NIHR INVOLVE, now part of the NIHR Centre for Engagement and Dissemination, recently undertook a mapping exercise and survey ( Sonpal et al., 2019) in order to find out more about how, when and where children and young people are involved in English health and social care research. This project identified a diverse range of active YPAGs, and other involvement of children and young people across England, and explored the benefits and challenges faced by health and social care researchers involving children and young people in their work. But it was a scoping, rather than a comprehensive mapping, exercise, and there is still a need to collate, understand and disseminate more comparable evidence on the nature, extent and impact of children and young people's involvement in research ( Brady and Preston, 2017). Knowing more about which children and young people are involved in research would enable researchers and research bodies to ensure that involvement is inclusive and diverse. Having comparable information across studies on when and how children and young people are involved in research, and the impact and outcomes of that involvement, would enable shared learning and the development of best practice ( Brady and Preston, 2017). Not having this information risks children and young people's involvement continuing to develop in a piecemeal fashion.

So, in summary, the current body of knowledge leads to several suggestions:

Involving children and young people in research is not the same as involving adults, and requires different considerations, as well as working with third parties (gatekeepers).

There are disparities in the characteristics of children and young people likely to participate, the types of decisions they are involved in making, and the extent to which this involvement is meaningful and effective.

More needs to be done to find out who is involved in research, how and whether different approaches disadvantage marginalized, 'vulnerable' and/or less frequently heard young people.

The background to this study

In September 2013, the GenerationR Alliance of YPAGs was inaugurated at a meeting at the Science Museum, and a report of this meeting, containing 11 recommendations for future developments, was accepted by the Director General of NIHR, Professor Dame Sally Davies and supported by the NIHR-funded James Lind Initiative ( GenerationR, 2014). Three recommendations underpin the project discussed below, particularly recommendation 10:

Recommendation 9: Develop an effective communications strategy that showcases involvement activities and sustains the objectives highlighted at GenerationR.

Recommendation 10: Develop a systematic way to measure the impact of involvement activities.

Recommendation 11: Work with the education sector to promote clinical research education in schools.

Understanding and evaluating the impact of public involvement is becoming an increasingly important issue, as discussed above. An evaluation of the GenerationR YPAGs by the National Children's Bureau ( Wallace and Eustace, 2014) found that the YPAGs had contributed to a significant number of research proposals, almost half of which informed research at the funding application stage (48 per cent), and 38 per cent after projects had gone through ethical review and were adopted into the NIHR portfolio ( Wallace and Eustace, 2014). However, the National Children's Bureau evaluation only focused on studies that had worked with the GenerationR YPAGs, and did not look at studies on the NIHR CRN portfolio, which may have involved children and young people in other ways. The evaluation also identified the need to 'develop clear streamlined and effective monitoring systems to enable the gathering of high-quality data and collation of findings across the network' ( Wallace and Eustace, 2014: 30), echoing Recommendation 10 in the GenerationR report.

Exploring the feasibility of evaluating children and young people's involvement in NIHR studies

In 2017, the authors were commissioned by the James Lind Initiative to explore children and young people's involvement in the design and delivery of research studies adopted by the NIHR Clinical Research Network: Children (CRN Children) ( Brady and Preston, 2017). The purpose of this project was to find out what information was available on how and when children and young people were involved in research, and what difference this involvement makes to research, and to the children and young people involved. The project was divided into two stages.

Stage 1 involved an assessment of the availability, quality and reliability of data on children and young people's involvement in the CRN Children portfolio. We analysed data available through the NIHR CRN Central Portfolio Management System (CPMS), which is a national information system of study data. Data were extracted from 1 April 2015 to August 2016. We also reviewed data captured from the CRN Closed Study Evaluation Survey, and data collected within individual GenerationR YPAGs.

Stage 2 involved a qualitative exploration through telephone and face-to-face conversations with 12 key stakeholders, including senior public involvement staff within the NIHR, and involvement professionals including GenerationR YPAG coordinators. These semi-structured conversations explored informants' views on monitoring and evaluation systems used to record involvement activities, the feasibility of systematically collecting and collating data on the nature and impact of children and young people's involvement, and the key opportunities and challenges in doing so.

Key findings

In Stage 1, assessing the availability, quality and reliability of information, one of the difficulties we found was accessing the data from the CRN CPMS because only certain personnel within the CRN had permission to access the data. However, once permission was obtained, reports indicated that from the 563 adopted studies held within the CPMS, only 48 studies had completed the Patient and Public Involvement and Engagement (PPIE) activities sections.

All 48 studies were non-commercial studies. More detail was provided in the free-text public involvement section, but only 13 out of the 48 studies completed this section. The 13 completed responses indicated that members of the public were involved in the prioritization of the research and commissioning the research, and were involved throughout the study. Only 1 of the 13 responses expanded on who had been involved, and in that case, it was a parent.

It was therefore not possible to identify through CPMS data a single study in the CRN Children portfolio that had involved children or young people. This does not mean that no children and young people were involved in studies, but rather that it was not possible to determine whether those involved were children or young people rather than adults.

The CRN Closed Study Evaluation Survey captures feedback from study teams at the point of study closure (when a study is no longer recruiting) about their experience of working with the CRN. It included two questions about PPIE in the research process, and researchers' perceptions of the impact of this involvement. Similarly to accessing data within the CPMS, the data can only be accessed by the divisional portfolio team and is not routinely collected. A more detailed statistical analysis of the surveys would require encouraging all researchers to complete the form, as it was also not possible to identify which studies, if any, had involved children and young people rather than adults, or whether or not researchers accessed YPAGs, due to the limited number of surveys completed. A question that addressed 'who' was involved would also need to be added to the survey, as opposed to focusing on the stages of involvement, as discussed in the introduction.

Following the reorganization of the CRN, and changes in sponsorship of GenerationR YPAGs, each group now uses different techniques to monitor, evaluate and report group activities. Often this is done in isolation, fitting around busy workloads and managing different expectations for reporting to those sponsoring individual YPAGs. Most of the information collected focuses on the stages of research (priority setting, design, management, dissemination and so on) in which people had been involved.

In Stage 2, informants reported that past attempts to gather systematic information about, and to map, public involvement activities across the NIHR had been patchy and met with limited success. However, in addition to the opportunities within existing systems already discussed, ResearchFish was mentioned as offering potential opportunities. ResearchFish is an external online system used by the NIHR since 2012, which requires award holders, on an annual basis, to submit data about their research outputs, outcomes and impacts ( www.ResearchFish.net/). Questions on public involvement have been asked of all award holders since 2016. These focus on the stages at which there has been public involvement and researchers' perceptions of the benefits of involvement. This is the first time that public involvement questions had been systematically asked of researchers in the regular reporting process. However, it is unclear exactly what data are captured and analysed, but also, more importantly, how these data are going to show the impact on NIHR-funded studies and on those who get involved in the design and delivery of health research. Informants felt that there was scope for further analysis of free-text responses. The addition of demographic questions on who is involved would also be helpful.

The people we spoke to thought that it was important for the NIHR to ask some new questions about who is involved in research and how, as well as what difference this involvement makes. They suggested we could do this by looking at what people say in funding applications and reports about public involvement, as well as by adding new questions about who is involved in research to the reports that researchers have to fill in. People also pointed out that most information collected on young people's involvement is written by researchers, and that there needs to be more opportunities for young people to have a say on how they have been involved, and the difference they think it has made to them and to the research.

In summary, this work suggests that there is currently no way of identifying through existing CRN data collection systems which studies have involved children and young people, the ways in which they have been involved, and what impact any involvement may have had. Furthermore, several questions remain about systems and processes of recording children and young people's activities on studies not on the CRN portfolio, and at different stages of the research cycle.

Several recommendations came out of this research:

Any reviews or development of public involvement questions in the NIHR Integrated Research Application System, ResearchFish, and the NIHR standard application form and monitoring information should consider the need for the collection and collation of information on who is involved in research and how, as well as on impact.

In its work on measuring the impact and developing standards for public involvement following Going the Extra Mile ( NIHR, 2015), the NIHR should consider the need to identify when children and young people, as distinct from adults, are involved in research.

Alongside other demographic information, the NIHR should routinely collect information on the ages of those involved as public reviewers, on advisory boards and in other roles, as currently being piloted by the NIHR Central Commissioning Facility.

The GenerationR steering committee and Alliance should consider whether and how it may be possible to capture and collate data on YPAG activity, including reviving the study monitoring form from the National Children's Bureau evaluation ( Brady and Preston, 2017).

Conclusions

Children and young people have a right to be involved in things that affect them, including research. Involvement appears to have benefits for the children and young people participating, and for research, and it should lead to policies and services that reflect children and young people's priorities and concerns ( Brady et al., 2018; Fleming and Boeck, 2012), and enhance the opportunity for optimal health outcomes ( Jamal et al., 2015). But this article has outlined how more needs to be done to provide consistent and comparable evidence of these benefits and impacts, and the realities and challenges of involvement in practice. In our view, it is entirely possible for children and young people to make meaningful contributions to even the most complex health research studies. But in order to better understand this, and to develop practice further, research is also needed on how, when and where children and young people are involved in health research.

Many of the issues raised by this exploratory project are relevant to the involvement of adults as well as children and young people. The current climate of limited budgets, and changes to NHS services and commissioning, has implications for both adults' and children and young people's involvement in research, both for the continuation of YPAGs and other projects, and in ensuring that learning is captured or shared. Effective involvement requires critical reflection and shared learning, as well as an understanding of the wider systems and structures that can facilitate or present barriers to participative practice. If we knew more about who is involved in research, and how and whether different approaches disadvantage marginalized, 'vulnerable' and/or less frequently heard children and young people, this could make a useful contribution to wider debates on diversity and inclusion in public involvement, and how to go beyond (but also not exclude) the 'usual suspects'.

How and when children and young people are involved is largely determined and controlled by adults who have the power to put into practice (or not) decisions that children and young people are involved in making. Any work to develop measures of the impact of children and young people's involvement in research should also consider how to include the views of the children and young people involved, and not just those of the adults involved. This includes the production of research reports, articles and other outputs, but also consideration of how metrics and measures of public involvement can include the public voice. Under the UNCRC, children and young people have a right to have a say in matters that affect them (Article 12), but they also have the right to seek, receive and impart information and ideas of all kinds (Article 13). In our view, this includes contributing to the evaluation of, and dissemination of learning from, public involvement.

The authors would like to thank the James Lind Initiative for commissioning this project, and in particular to acknowledge the support of Sir Iain Chalmers, coordinator of the James Lind Initiative, who identified the need for this project, secured funding and provided encouragement throughout. We also want to thank Sandy Oliver, Professor of Public Policy at the UCL Institute of Education, for her invaluable support as adviser to this project.

Last, but by no means least, we would like to thank all those who provided access to data and support in Stage 1, and the stakeholders who contributed their time, knowledge and considerable expertise in Stage 2.

Louca-Mai Brady is a senior research fellow at UCL Institute of Ophthalmology - where she supports eyeYPAG, a young people's advisory group for paediatric eye and vision research - and an independent research and public involvement consultant and facilitator. She has particular interests in children and young people's involvement in health services and research, including supporting young people's involvement as young advisers and as co-researchers in health and social care research.

Jennifer Preston is the Senior Patient and Public Involvement and Engagement (PPIE) Manager at the University of Liverpool. Her main role is to deliver a strategy for the involvement and engagement of children and young people and families in paediatric health research, both in the UK and internationally. She leads the GenerationR Alliance of young people's advisory groups, and she is a founding member of the European Young Persons' Advisory Group Network (eYPAGnet).

1. P. Alderson 2014 'Children as patients' G.B. Melton A. Ben-Arieh J. Cashmore G.S. Goodman N.K. Worley The SAGE Handbook of Child Research London SAGE Publications 100 17

2. J. Bate N. Ranasinghe R. Ling J. Preston R. Nightingale S. Denegri 2016 'Public and patient involvement in paediatric research' Archives of Disease in Childhood - Education and Practice Edition 101 3 158 61 Online [ Cross Ref]

3. D. Bird L. Culley M. Lakhanpaul 2013 'Why collaborate with children in health research: An analysis of the risks and benefits of collaboration with children' Archives of Disease in Childhood - Education and Practice Edition 98 2 42 8 Online [ Cross Ref]

4. J. Boyden J. Ennew 1997 Children in Focus: A manual for participatory research with children Stockholm Rädda Barnen

5. L.-M. Brady B. Graham 2019 Social Research with Children and Young People: A practical guide Bristol Policy Press

6. L.-M. Brady L. Templeton P. Toner J. Watson D. Evans B. Percy-Smith A. Copello 2018 'Involving young people in drug and alcohol research' Drugs and Alcohol Today 18 1 28 38 Online [ Cross Ref]

7. J. Brett S. Staniszewska C. Mockford S. Herron-Marx J. Hughes C. Tysall R. Suleman 2014 'Mapping the impact of patient and public involvement on health and social care research: A systematic review' Health Expectations 17 5 637 50 Online [ Cross Ref]

8. T. Cockburn 2005 'Children's participation in social policy: Inclusion, chimera or authenticity?' Social Policy and Society 4 2 109 19 Online [ Cross Ref]

9. A. Crowley 2015 'Is anyone listening? The impact of children's participation on public policy' International Journal of Children's Rights 23 3 602 21 Online [ Cross Ref]

10. R. Dennehy M. Cronin E. Arensman 2019 'Involving young people in cyberbullying research: The implementation and evaluation of a rights-based approach' Health Expectations 22 1 54 64 Online [ Cross Ref]

11. D. Evans J. Coad K. Cottrell J. Dalrymple R. Davies C. Donald V. Laterza A. Long A. Longley P. Moule K. Pollard J. Powell A. Puddicombe C. Rice R. Sayers 2014 'Public involvement in research: Assessing impact through a realist evaluation' Health Services and Delivery Research 2 36 1 128 Online [ Cross Ref]

12. J. Fleming T. Boeck 2012 Involving Children and Young People in Health and Social Care Research London Routledge

13. H. Hayes S. Buckland M. Tarpey 2012 Briefing Notes for Researchers: Public involvement in NHS, public health and social care research Eastleigh INVOLVE Online. www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf (accessed 12 June 2020)

14. F. Jamal R. Langford P. Daniels J. Thomas A. Harden C. Bonell 2015 'Consulting with young people to inform systematic reviews: An example from a review on the effects of schools on health' Health Expectations 18 6 3225 35 Online [ Cross Ref]

15. S.J. Mitchell A.-M. Slowther J. Coad S. Akhtar E. Hyde D. Khan J. Dale 2019 'Ethics and patient and public involvement with children and young people' Archives of Disease in Childhood - Education and Practice Edition 104 4 195 200 Online [ Cross Ref]

16. K. Oliver R. Rees L.-M. Brady J. Kavanagh S. Oliver J. Thomas 2015 'Broadening public participation in systematic reviews: A case example involving young people in two configurative reviews' Research Synthesis Methods 6 2 206 17 Online [ Cross Ref]

17. B. Percy-Smith 2010 'Councils, consultations and community: Rethinking the spaces for children and young people's participation' Children's Geographies 8 2 107 22 Online [ Cross Ref]

18. B. Percy-Smith N. Thomas 2010 A Handbook of Children's Participation: Perspectives from theory and practice London Routledge

19. S. Spronk 2014 'Realizing children's right to health: Additional value of the optional protocol on a communications procedure for children' International Journal of Children's Rights 22 1 189 204 Online [ Cross Ref]

20. K. Staley 2009 Exploring Impact: Public involvement in NHS, public health and social care research Eastleigh INVOLVE Online. www.invo.org.uk/wp-content/uploads/2011/11/Involve_Exploring_Impactfinal28.10.09.pdf (accessed 12 June 2020)

21. S. Staniszewska J. Brett I. Simera K. Seers C. Mockford S. Goodlad D.G. Altman D. Moher R. Barber S. Denegri A. Entwistle P. Littlejohns C. Morris R. Suleman V. Thomas C. Tysall 2017 'GRIPP2 reporting checklists: Tools to improve reporting of patient and public involvement in research' Research Involvement and Engagement 3 Article 13, 1-11. Online [ Cross Ref]

22. E. Wallace A. Eustace 2014 Evaluation of Consumer Involvement in the NIHR Clinical Research Network: Children 2013-2014 London National Children's Bureau

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How do we know what works? Evaluating data on the extent and impact of young people's involvement in English health research

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The case for children and young people's involvement in health research has been well documented, but less attention has been paid to the experiences and impact of involving children and young people rather than adults.

# data[].attributes.headline
Reflections, impact and recommendations of a co-produced qualitative study with young people who have experience of mental health difficulties

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Reflections, impact and recommendations of a co-produced qualitative study with young people who have experience of mental health difficulties

# data[].attributes.headline
Wellcome: Review of YPs involvement in health research

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Wellcome: Review of YPs involvement in health research

# data[].attributes.headline
Participation in Children and Young People's Mental Health 

# data[].attributes.subject
Participation in Children and Young People's Mental Health 

# data[].attributes.attachment_link.readable_text
Participation in Children and Young People's Mental Health: An Essential Guide aims to break down the historical challenges surrounding children and young people's mental health (CYPMH) participation.

It explores topics from how to conceptualise participation to more practical advice and guidance surrounding how to 'do' participation. Uniquely edited by Experts-by-Experience, it offers useful insights to how participation ought to be led from those with experience in the field. This ground-breaking text is supported by contributors from leading experts, including a mixture of lived experience and academic persepctives, providing a comprehensive dive into key concepts and practical examples to help improve practice. The chapters aim to spark thinking, conversations, and actions in participation and will provide lessons to embed into services, organisations, areas, groups, practice, and work.

This text is an essential guide for trainees and professionals working in CYPMH services which includes the NHS in England, voluntary sector, and other health systems internationally.

Foreword

Stuart Dodzo, Rachel McGuire, Duncan Law, and Kathryn Pugh

1. Introduction

Hannah Sharp and Leanne Walker

2. What is Participation? A Theoretical Framework for Children and Young People's Participation

Yvonne Anderson

3. Tokenism Versus Meaningful Engagement

Leanne Walker

4. The Benefits and Challenges of Participation for Children and Young People

Anna Wilson

5. The Benefits and Challenges of Participation for Children and Young People's Mental Health Services and Those Working Within Them

Sarah Gray

6. Involving Children and Young People in their Own Care

The Midlands Young Advisors

7. A Guide to Parent and Carer Participation

Wendy Minhinnett and Nikki Chapman

8. Involving Children, Young People, Parents, and Carers in Service Development

Hannah Sharp and Demi

9. Involving Children and Young People in Mental Health Research

Cathy Street and Amanda Cooper

10. Involving Younger Children

Ann Cox

11. Engaging with Diverse Communities

Zaynab "ZeZe" Sohawon, Harry Dixon, and Amari Creak

12. Participation in the Community Versus Inpatient Settings

Hannah Sharp, Trafford Youth Cabinet, Carol Anne Murphy, Lucy North and Sarah Hutchins

13. Peer Support: An Alternative Approach to Using Lived Experience

Oli Hawley

14. Why Participation Requires Systemic Culture Change and How We Get There

Hannha Sharp

15. Future Progress

Hannah Sharp and Leanne Walker

Biography

Hannah Sharp is an international consultant on patient participation in children and young people's mental health services. She holds a Bachelor's degree in Social and Political Sciences with Philosophy.

Leanne Walker has worked for the last decade, locally, nationally and internationally in the mental health lived experienced field and has a postgraduate certificate in transformational leadership.

# data[].attributes.attachment_link.title
Participation in Children and Young People's Mental Health: An Essential Guide

# data[].attributes.attachment_link.description
Participation in Children and Young People's Mental Health: An Essential Guide aims to break down the historical challenges surrounding children and young people's mental health (CYPMH) participation. It explores topics from how to conceptualise participation to more practical advice and guidance surrounding how to 'do' participation.

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Co-production vs public involvement - RDS London

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Wondering what the difference between co-production and public involvment is? Read this blog from our public involvement team to find out.

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Ethical research involving children (ERIC database)

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Ethical research involving children (ERIC database)

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Lots of guidance and case studies etc

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The ERIC library contains over 800 peer-reviewed academic and NGO / industry publications on undertaking ethical research involving children. New publications are added regularly. Browse the most recent additions below.

If you are looking for a specific topic, region or author please use the search feature here...

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LIBRARY - Ethical Research Involving Children

# data[].attributes.attachment_link.description
Browse the ERIC library of over 700 peer-reviewed academic and other publications on undertaking ethical research with children and young people.

# data[].attributes.headline
Twitter thread from @dr_know on RECs and journals regarding patient involvement

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Twitter thread from @dr_know on RECs and journals regarding patient involvement

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Let's have a better conversation about ethics and patient involvement! There are some great pieces out there to push our thinking beyond "do you need a REC letter or not to publish it":🧵

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Let's have a better conversation about ethics and patient involvement! There are some great pieces out there to push our thinking beyond "do you need a REC letter or not to publish it":🧵

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Let's have a better conversation about ethics and patient involvement! There are some great pieces out there to push our thinking beyond "do you need a REC letter or not to publish it":🧵
— Sarah Knowles (@dr_know) August 10, 2022

# data[].attributes.attachment_link.metadata.attachment_props_source.data.text
Let's have a better conversation about ethics and patient involvement! There are some great pieces out there to push our thinking beyond "do you need a REC letter or not to publish it":🧵

# data[].attributes.attachment_link.metadata.attachment_props.original_text
Let's have a better conversation about ethics and patient involvement! There are some great pieces out there to push our thinking beyond "do you need a REC letter or not to publish it":🧵

# data[].attributes.attachment_link.metadata.attachment_props.text
Let's have a better conversation about ethics and patient involvement! There are some great pieces out there to push our thinking beyond "do you need a REC letter or not to publish it":🧵

# data[].attributes.headline
Twitter thread from Jim Elliot @drakesyard on journals

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Twitter thread from Jim Elliot @drakesyard on journals

# data[].attributes.wish_content.attachment_props.text
The problem encountered by @dr_know which is long running & too common is caused by two things: 1 is the misunderstanding / misinterpretation of journals' requirements around research ethics approval by editorial staff, mostly junior I think...1/10 https://t.co/zVd4C7LAYK

# data[].attributes.wish_content.attachment_props.original_text
The problem encountered by @dr_know which is long running & too common is caused by two things: 1 is the misunderstanding / misinterpretation of journals' requirements around research ethics approval by editorial staff, mostly junior I think...1/10 https://t.co/zVd4C7LAYK

# data[].attributes.wish_content.attachment_props.referenced_tweets[].text
Ping @helenfcraig @jaderdavies @Niccola_CPD @Drakesyard So frustrating @dr_know. We are doing a project funded by @UCL_CoPro looking into these issues as there is poor understanding of what research ethics is. https://t.co/vmYAjFC7ej

# data[].attributes.attachment_link.embed_code
The problem encountered by @dr_know which is long running & too common is caused by two things: 1 is the misunderstanding / misinterpretation of journals' requirements around research ethics approval by editorial staff, mostly junior I think...1/10 https://t.co/zVd4C7LAYK
— Jim Elliott (@Drakesyard) August 10, 2022

# data[].attributes.attachment_link.metadata.attachment_props_source.data.text
The problem encountered by @dr_know which is long running & too common is caused by two things: 1 is the misunderstanding / misinterpretation of journals' requirements around research ethics approval by editorial staff, mostly junior I think...1/10 https://t.co/zVd4C7LAYK

# data[].attributes.attachment_link.metadata.attachment_props_source.includes.tweets[].text
Ping @helenfcraig @jaderdavies @Niccola_CPD @Drakesyard So frustrating @dr_know. We are doing a project funded by @UCL_CoPro looking into these issues as there is poor understanding of what research ethics is. https://t.co/vmYAjFC7ej

# data[].attributes.attachment_link.metadata.attachment_props.original_text
The problem encountered by @dr_know which is long running & too common is caused by two things: 1 is the misunderstanding / misinterpretation of journals' requirements around research ethics approval by editorial staff, mostly junior I think...1/10 https://t.co/zVd4C7LAYK

# data[].attributes.attachment_link.metadata.attachment_props.text
The problem encountered by @dr_know which is long running & too common is caused by two things: 1 is the misunderstanding / misinterpretation of journals' requirements around research ethics approval by editorial staff, mostly junior I think...1/10 https://t.co/zVd4C7LAYK

# data[].attributes.attachment_link.metadata.attachment_props.referenced_tweets[].text
Ping @helenfcraig @jaderdavies @Niccola_CPD @Drakesyard So frustrating @dr_know. We are doing a project funded by @UCL_CoPro looking into these issues as there is poor understanding of what research ethics is. https://t.co/vmYAjFC7ej

# data[].attributes.headline
How to involve children and young people in what is, after all, their research (Preston et al 2019)

# data[].attributes.subject
How to involve children and young people in what is, after all, their research (Preston et al 2019)

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How to involve children and young people in what is, after all, their research

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Third in a series of four articles addressing ethical approaches and issues in undertaking clinical research with children and young people.

# data[].attributes.headline
‘From their own words’: A co-produced study interpreting children and young people's experiences of emotional abuse and neglect expressed in anonymous, online peer-peer message forums (Bennett et al 2023)

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‘From their own words’: A co-produced study interpreting children and young people's experiences of emotional abuse and neglect expressed in anonymous, online peer-peer message forums (Bennett et al 2023)

# data[].attributes.headline
Co-producing research with youth: The NeurOx young people's advisory group model (Pavarini et al. 2019)

# data[].attributes.subject
Co-producing research with youth: The NeurOx young people's advisory group model (Pavarini et al. 2019)

# data[].attributes.body
YPAG model - flexible co-production

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Involving NeurOX YPAG in developing a co-produced engagement tool for research 

# data[].attributes.headline
How to build a game for empirical bioethics research: The case of ‘Tracing Tomorrow’ (Lyreskog et al. 2021)

# data[].attributes.subject
How to build a game for empirical bioethics research: The case of ‘Tracing Tomorrow’ (Lyreskog et al. 2021)

# data[].attributes.headline
Social research with children and young people/Chapter 3: Involving Children and Young People in Research (Brady and Graham, Book, 2018)

# data[].attributes.subject
Social research with children and young people/Chapter 3: Involving Children and Young People in Research (Brady and Graham, Book, 2018)

# data[].attributes.headline
Involving young people in drug and alcohol research (Brady 2018)

# data[].attributes.subject
Involving young people in drug and alcohol research (Brady 2018)

# data[].attributes.body
Proposed 'Hub and spoke' model to involve YP with youth support/community

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Copyright

License

Published by Emerald Publishing Limited. This article is published under the Creative Commons Attribution (CC BY 4.0) licence. Anyone may reproduce, distribute, translate and create derivative works of this article (for both commercial & non-commercial purposes), subject to full attribution to the original publication and authors. The full terms of this licence may be seen at http://creativecommons.org/licences/by/4.0/legalcode

Introduction

Young people's involvement in the Y-SBNT study

Family interventions appear to be an important element of young people's drug and alcohol treatment ( Velleman et al., 2005), however, implementation of family approaches in UK services is low ( Watson et al., 2017). The Youth Social Behaviour and Network Therapy (Y-SBNT) study ( Watson et al., 2015) was a randomised controlled trial (RCT) which aimed to demonstrate the feasibility of recruiting young people to a specifically developed family- and wider social network-based intervention by adapting and then testing a version of adult SBNT ( Copello et al., 2009). This involved adapting the original evidence-based family and social network intervention (SBNT) developed and tested with adult alcohol misusers to the youth context. Adaptation of the intervention included the involvement of young people with experience of drug and alcohol services, as discussed in this paper, as well as consultation with treatment professionals working with young people. A pragmatic, two-armed randomised controlled open feasibility trial followed, based in two UK-based treatment services. In all, 53 young people aged 12-18 years, newly referred and accepted for structured interventions for drug and/or alcohol problems, were recruited and randomised 1:1 to receive either the adapted Y-SBNT intervention or treatment as usual. This paper focusses on learning from one specific element of the study: the involvement of young people in the research process, and the findings of the wider feasibility trial are reported elsewhere ( Watson et al., 2017). Overall, the aim was to maximise opportunities for young people's involvement in the adaptation of the intervention and trial to ensure that both addressed the issues faced by young people with alcohol and/or drug problems. The study was also a case study in doctoral research by one author (L-MB) on how young people's involvement can be embedded in health services and research[1] ( Brady, 2017). This paper draws on this doctoral research and the study report ( Watson et al., 2017), and is informed by the GRIPP2 guidance on reporting patient and public involvement in research ( Staniszewska et al., 2017).

All publicly funded health research in the UK, including the study discussed in this paper, is now expected to have some element of public involvement ( Evans et al., 2014). Involving those who are the focus of research has been found to have a positive impact on what is researched, how research is conducted and the impact of research findings on services and in the lives of those involved ( Brett et al., 2014; Staley, 2009). The United Nations Convention on the Rights of the Child ( UN, 1989) has established international recognition that all children have a right to the highest possible standards of both healthcare and involvement ( Alderson, 2014) as well as a right to have a say in decisions that affect them. The understanding that children and young people should be involved in decisions which affect them has been increasingly reflected in UK law, guidance, regulation and policy in relation to health and social care ( Department of Health, 2013; Franklin and Sloper, 2005). But there has been less attention paid to the experiences and impact of involving children and young people than the involvement of adults ( Bird et al., 2013). Involvement should lead to research, and ultimately services, that better reflect young people's priorities and concerns ( Brady et al., 2012; Fleming and Boeck, 2012). This is especially important for young people deemed to be more "vulnerable", whose voices are often absent from the literature ( Richards et al., 2015). For example, users of mental health services ( Mawn et al., 2015), those who are looked after (in the care system) ( Powell and Smith, 2009) and young people with alcohol and/or drug problems ( Brady, 2017). The work discussed in this paper focussed on involvement as commonly defined in health and social care research as "research [...] carried out 'with' or 'by' members of the public rather than 'to', 'about' or 'for' them" (INVOLVE, 2016). But the terminology of involvement, participation and engagement can be contradictory and opaque, compounded by the increasing popularity of co-production, which is becoming an increasingly popular term in policymaking, governance, and research ( Filipe et al., 2017). However, work by National Institute for Health Research (NIHR) INVOLVE found that:

[...] [co-production]'s application in health and social care research varies, revealing a lack of consensus around the concept. Some argue that co-production in research is just "really good PPI [patient and public involvement]". For others it is very different; a much more deliberative process which requires public members and "professionals" to be involved on an equal footing throughout every stage of the design and delivery of research ( www.invo.org.uk/current-work/co-production/).

Furthermore, there are tensions between the participatory intent of co-production and the "expert"-driven notion of RCTs. The paper explores the lessons emerging from the involvement of a group of young people who are "less frequently heard" and was conducted as part of a PhD that focussed on understanding what it means to embed young people's participation in health services and research. The main aim was to explore whether and how young drug and alcohol service users could be meaningfully and effectively involved in an RCT.

Methods

The initial plan for young people's involvement in the Y-SBNT study was to form a young people's advisory group (YPAG) of 10-12 young people with previous experience of drug and alcohol treatment services. The YPAG is a common model for young people's involvement in health and social care research ( http://generationr.org.uk/; http://decipher.uk.net/public-involvement/young-people/), and we also drew on published guidance ( Kirby, 2004; INVOLVE, 2015; Shaw et al., 2011). The original aim was for the young advisors to work alongside the research team, supported by the study's public involvement leads, through a series of group meetings. But recruitment proved slower than anticipated, and initial meetings were poorly attended.

We therefore worked with young advisors to develop a more flexible model that focussed on what worked for the young people, recruiting through services known to the study team and in our localities. Involvement centred on consultations with young people at locations familiar to them, supplemented with e-mails, text messages, telephone conversations and postal correspondence. Young people were given the option of ongoing involvement as a young advisor, without obligation to do so. Regular newsletters, with contributions from young advisors where possible, were sent to all the involved young people, with the aim of keeping them informed even if they were unable to attend meetings or be involved in other ways.

Source material

A range of qualitative data was collected to inform our understanding of, and learning from, young people's involvement. Data collection included transcriptions of focus groups with the study's trial management group (TMG) and steering committee (TSC), phone and face-to-face meetings with the two young advisors who had long-term involvement in the study and conversations from young advisor meetings. The analysis also drew on TMG and TSC meeting notes, newsletters and other materials developed for and with young people, and notes from meetings with organisations supporting the engagement of young people in the study.

A thematic analysis approach was used to discover, interpret and report on themes and patterns of meaning within all of this qualitative material ( Braun and Clarke, 2013). Informed by Eisenhardt's (1989) paper on building theory from case study research, this involved initial thematic maps structured around research questions, a review of the literature and initial reflections. Transcribed materials and other qualitative documents were then coded to test the "fit" of the data with the initial themes identified, refining the thematic maps and identifying broader patterns and themes in an iterative process (see Brady, 2017, ch.4). Ethical approval for the Y-SBNT study (including young people's involvement) was given by NRES Committee West Midlands - Coventry and Warwickshire, and for the doctoral research by the University of the West of England Research Ethics Committee. All contributors gave informed consent.

Young people's contribution to the study

Young people contributed to all three phases of the study (see Box 1). During phase one (intervention development) they contributed to the design of the intervention, ensuring it was acceptable and relevant to the Y-SBNT study's target groups. During phase two (the randomised controlled feasibility trial) and phase three (analysis and reporting of data from the feasibility trial) young people's involvement included input into the design of recruitment and training materials, data collection tools, data analysis and interpretation, reporting and dissemination. This included co-presenting at a conference ( Brady et al., 2014) and co-authoring written outputs ( Brady et al., 2015; Chapter 8, Watson et al., 2017).

Findings

"Why we got involved": young advisor's perspectives

In the spirit of involving young people in all aspects of the study, these findings start with the views of the two young advisors who had the most long-standing involvement in the project (20 and 23 months):

I think it's important to involve young people in the Y-SBNT project because it's actually about young people, and I think they should have an input into it and not just the adults. I think it's important to involve young people who have used drug and alcohol services as they can understand what it's like for others who are in the shoes that they've been in - no offence to people that have got degrees! We have sort of walked the walk, so we know that stuff that other young people using services have to go through on a daily basis.

I wanted to get involved with this project because I've always wanted to do something like this to show others that it is possible and there is light at the end of the tunnel - and that no matter what circumstances they're in they've always got a voice. I want to make things better, I actually don't care as much what I get out of it, I just don't want to see any other young person suffering the way I had to, or end up dead or in prison. If I can help develop something that prevents that then I will

(Young advisor A).

I got involved in the project because I think that it's important that young people can get the help that they need in the most helpful and supportive way so it doesn't damage them. I think I've gained an insight into research with young people and the opinions of young people held by social agencies and professional networks. A project for young people should definitely consult young people and should be based around their views. Young people who have used drug and alcohol services will be able to reflect on their past use of services and give relevant feedback. Reading the chapter [on public involvement in the study report] and all the findings and the work you've done, and I've done, made me feel like my views are important. It's the first time a group of professionals have taken things I've said and made use of it, and benefited from it, in an academic project. I'm very much used to discussing my substance use history in a very negative light with no real benefit at the end, but this project has helped me realise that a negative experience has made me wiser

(Young advisor B).

The need for flexibility

The young people's perspectives above highlight the benefits as well as the challenges of working with a group of young people who had complex lives and little or no experience of either involvement or research. This challenged our thinking about how young people were involved in the study. We found that facilitating the input from young people needed to be dynamic and flexible in relation to the rhythms, preferences and commitments in their own lives:

Perhaps that sort of [YPAG] group structure isn't going to work with these sorts of young people in a project like this. And I think it is good to have a group and people fire off each other [...] but I still think the individual-level stuff that we've had has been really good and that's worked well and in a more natural way and perhaps this group need that level of support [...] because they're pretty chaotic, [with] multiple problems

(Research team member, TMG focus group).

My mental health has sometimes made it difficult for me to be involved [in the project] [...]. But I like how, if I can't come to a meeting, we can have a phone call instead or you're just a text [message] away, or we can do stuff by post. I've not always been well enough to come and see people face-to-face but that doesn't mean I couldn't be involved in things, whereas some organisations I've been involved with would have said 'you're ill or you couldn't come to a meeting so you can't be involved

(Young advisor A).

What I've liked is the flexibility. I've never had to make my own way to one of these meetings [...] of course it is a research project so there is a certain amount of formality about it but [individual involvement] keeps it relevant and convenient for to the young person which is always good

(Young advisor B).

However, the individual model of one-to-one work with one of the public involvement leads, supported by group work where possible, could lead to some young people being more isolated. One young person, who was mainly involved in this way because of availability and geography, said that, although she appreciated the flexibility and convenience of meeting at a time and place that suited her, she would have liked to meet other young advisors and more members of the research team.

Whilst adults think it is useful for young people to participate, and indeed young people may perceive benefits to involvement, we found that the young advisors often had other priorities:

Young people in my age group are in a very transitional stage of life, it's hard to commit long term. Some young people relapse, or simply don't like discussing their problem in depth

(Young advisor B).

Keeping in touch was also sometimes problematic; many of the young people we worked with were in hostel or other temporary accommodation, moving several times during the course of the project, as well as changing mobile phones. Lack of internet access and other personal reasons also meant that many did not have regular access to a computer or the internet or chose not to use e-mail or social media. We addressed this by working on young people-centred ways, discussing with the young people how best to keep in touch.

The need for sensitivity

Involvement in the study required young advisors to draw on their own experiences as users of drug and alcohol services, as well as considering the ways in which their family and wider networks had helped or hindered their recovery. Young advisors pointed out that, in this context, individual involvement may sometimes be more appropriate than group meetings:

This project talks about really personal stuff and the only way I can talk openly and honestly is because I've had a chance to get to know you [public involvement lead] face-to-face and because I trust you. It wouldn't work otherwise

(Young advisor A).

The skills and experience young people can gain is often cited as a benefit of involvement, but we found that in a study such as this crediting young people's involvement can be problematic:

As much as I would love to put on my CV that I've been involved [...] people might wonder why I've been an advisor to a drug project [...] it just raises a few question marks [...] I do always have that worry that they're going to think 'Oh she was a druggie' and yes it's the truth but I don't want every employer knowing that stuff

(Young advisor B).

Several of the young people involved in the study were living in care or in crisis, or had co-existing mental health problems. Young people with complex needs may feel powerless about decisions affecting their life and found it difficult to actively say "no" to involvement, instead opting out by remaining silent or not responding to contact ( Waldman, 2005). This was certainly our experience as all the young people who opted out of further involvement did so by not responding to contact rather than actively opting out. However, both of the two long-standing young advisors had periods when they were unable to be involved in the project but subsequently re-engaged with it when their circumstances changed. We found that it was important to maintain a balance between keeping in contact and leaving the door open for future re-engagement, and not making young people feel "hassled".

The role of services

Adults, either parents and carers or professionals, often act as "gatekeepers" to young people and can either facilitate or constrain their involvement ( Cree et al., 2002; Hood et al., 1996). It was sometimes difficult to engage the interest of services in the potential opportunities that involvement could provide for young people:

Some professionals don't see the value of these projects and don't commit to recruiting young people. Without this you just can't engage young people and do projects like this

(Young advisor B).

Some services were reluctant to pass information on to young people because they were concerned about young people being too vulnerable or, conversely, because they thought that young people might not be "academic" or reliable enough. But when we were able to successfully involve young people in the project, the role of services was crucial both in recruitment and in supporting their ongoing engagement. The young people who become engaged almost all did so because someone in a service understood what we were doing and actively promoted the opportunity to young people and supported their engagement.

Developing a different approach to involving young people

Despite the challenges we faced in identifying and recruiting young people with experience of alcohol and/or drug problems for ongoing involvement in the study, young people were actively involved through all stages of the research. Being a doctoral case study also created the opportunity for additional reflection and learning. Towards the end of the study we worked with the young advisors to reflect on what we had learnt and how we might best involve young people in future studies. Both researchers and young advisors felt that, ultimately, some form of ongoing group was the best way to involve young people; but one that was more flexible and young people-centred than a fixed-location YPAG with a largely static membership. Instead what emerged was the need for a more fluid "community of practice" ( Wenger, 1998) in which young people can gradually develop capacity for engagement on their own terms, in what Lave and Wenger (1998) refer to as "legitimate peripheral participation".

Box 2 summarises the model which we developed in collaboration with the young advisors.

Discussion

While the evidence base for public involvement has expanded over the past decade, the quality of reporting is often inconsistent, which limits understanding of how it works, for whom, and why ( Staniszewska et al., 2017). There is a need to collate, understand and disseminate more evidence on the nature, extent and impact of young people's involvement in research ( Brady and Preston, 2017). The Y-SBNT study sought to explore ways in which young people with experience of using substance misuse services could be involved in all aspects of a study of this nature. It provided an opportunity to reflect on how the rhetoric of involvement was operationalised in reality, and to reflect on the learning that emerged from this process.

The Y-SBNT study, as with many studies involving young people in health research, began with an adult-led set up in which plans for involvement were established before young people became involved, rather than collaboratively exploring with young people what would work best for them. In this case, the time taken to establish a group of young advisors and the lack of established YPAG members with relevant experience meant it was difficult to involve young people in the initial stages of the project. If the primary purpose of young people's involvement in research is for them to comment on how to make research materials more "young people-friendly", this is nearer to consultation than authentic participation ( Cockburn, 2005), co-production or emancipatory models of involvement ( Beresford, 2013; Gibson et al., 2012). The dominant discourses and cultures of health services and research often do not sit easily with partnership initiatives with young people ( Todd, 2012). Although consultation can be helpful, it can also be an easy way for researchers to "tick the public involvement box" and could also exclude those young people who are less frequently heard, such as those with experience of alcohol and/or drug problems ( Brady, 2017). Furthermore, focussing just on consultation limits the extent to which young people are able to participate more fully as partners in, or coproduce, research.

Y-SBNT young advisors spoke about the benefits of involvement for their wider peer group as well as personal benefits, including being able to use difficult personal experiences to create positive change: but doing so safely, required building trust and being sensitive to individual circumstances. Young people have a right to be involved in matters that affect them, but in exercising that right, they should be able to influence how they participate as well as exercise the right not to be involved. Individuals who may be under significant stress might see limited personal benefit of being involved as a research collaborator ( Beresford, 2000). It can be particularly difficult to involve young people in research on sensitive topics, such as those that are private, stressful or "potentially expose stigmatising, or incriminating information" ( Lee, 1993). We found that inclusive involvement requires providing opportunities for young people who want to be involved to do so in ways that work for them. But if, when and how they can be involved is ultimately a matter of individual choice. The model which emerged from young people's involvement in the study recognises this and makes a wider contribution by highlighting processes and dynamics relevant to young people's involvement in substance use research, as well as more widely in public involvement in health and social care services and research. We found that involvement needs to be embedded in everyday practices, systems and cultures, but at the same time young people and those facilitating their involvement need to be able to be "critical friends" and to have the independence and resources to be able to drive a more participatory and inclusive involvement. However, this requires careful consideration of the scope and context for the involvement, including the requirements of an RCT by NIHR regulatory and commissioning bodies, available resources and the limits of young people's possible influence ( Brady, 2017).

There is currently no systematic way of knowing which young people are involved in research, let alone assessing what form that involvement may have taken or any impacts from involvement ( Brady and Preston, 2017). There is also uncertainty about how to increase the diversity of young people involved in health and social care research ( Brady, 2015). Therefore, it is important to consider how approaches to involvement and co-production may exclude or include young people in substance use research and more widely, as well as to document that involvement. This paper contributes to this body of knowledge, both through the model which emerged through this process ( Box 2) and our reflections on the learning which emerged during this process.

Note

1.

Undertaken at the University of West of England, Bristol, UK as part of a scholarship supported by Professor David Evans and Barry Percy-Smith.

References

(2015), "Guest blog: involving children and young people in health and social care research: the need for a new perspective", BMJ Archives of Disease in Childhood, http://blogs.bmj.com/adc/2015/01/06/guest-blog-involving-children-and-young-people-in-health-and-social-care-research-the-need-for-a-new-perspective/

(2017), "Evaluating the extent and impact of young people's involvement in National Institute for Health Research (NIHR) studies: an assessment of feasibility", http://generationr.org.uk/?p=1375

Brady, L.-M. and Templeton, L. , young co-presenter (2014), "Involving children and young people in research: the usual suspects?", www.invo.org.uk/posttypeconference/involving-children-and-young-people-in-research-the-usual-suspects/

Brady, L.-M. and Templeton, L. , young co-authors (2015), "Involving children and young people in research: not the usual suspects", www.invo.org.uk/posttypenewsletter/winter-2014-15/

(2009), Exploring Impact: Public Involvement in NHS, Public Health and Social Care Research, NIHR INVOLVE, Southampton, www.invo.org.uk/posttypepublication/exploring-impact-public-involvement-in-nhs-public-health-and-social-care-research/

Further reading

Acknowledgements

This Y-SBNT study was funded by the NIHR Health Technology Assessment Programme (project number 11/60/01). The views and opinions expressed herein are those of the authors and do not necessarily reflect those of the Health Technology Assessment Programme, NIHR, NHS or the Department of Health. The study was coordinated by the University of Birmingham and sponsored by Birmingham and Solihull Mental Health Foundation Trust. The associated PhD by Louca-Mai Brady was supported by a bursary from the University of the West of England, and supervised by Barry Percy-Smith and David Evans (co-authors on this paper). The authors would like to thank to all the young people who have been involved in the project, all the services and staff who supported their involvement, and to the members of study team not involved in the development of this paper including Sangeeta Ambegaokar, Donna Back, Ed Day, Charlie Lloyd, Eilish Gilvarry and Paul McArdle.

Corresponding author

About the authors

"Embedding Young People's Participation in Health Services and Research". Previous roles include Senior Research Officer at the National Children's Bureau Research Centre, where she led work on the involvement in children and young people in research, and Principal Research Adviser at Turning Point.

A Handbook of Children and Young People's Participation: Perspectives from Theory and Practice (co-edited with Nigel Thomas, Routledge, 2010).

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Involving young people in drug and alcohol research

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Involving young people in drug and alcohol research - Author: Louca-Mai Brady, Lorna Templeton, Paul Toner, Judith Watson, David Evans, Barry Percy-Smith, Alex Copello

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Framework to help design and review research involving children (Phillips et al. 2019)

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Framework to help design and review research involving children (Phillips et al. 2019)

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Framework to help design and review research involving children

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This is the third of a series of four articles addressing ethical approaches and issues in undertaking clinical research with children and young people (CYP). This paper addresses the major ethical aspects of studies with CYP, where they vary from studies in adults.

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National Centre for Research Methods (NCRM)

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National Centre for Research Methods (NCRM)

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The Ethics of Research Involving Children: Common Questions, Potential Strategies and Useful Guidance

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This series of guidance papers – The Ethics of Research Involving Children: Common Questions, Potential Strategies and Useful Guidance – offers tailored commentary and links to useful resources to assist those undertaking research relating to children and childhood.

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NCB: Involving Children and Young People

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NCB: Involving Children and Young People

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The Youth Patient and Public Involvement Café—A youth-led model for meaningful involvement with children and young people (Thomson et al 2022)

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The Youth Patient and Public Involvement Café—A youth-led model for meaningful involvement with children and young people (Thomson et al 2022)

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Developing a novel co-produced methodology to understand ‘real-world’ help-seeking in online peer–peer communities by young people experiencing emotional abuse and neglect

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Developing a novel co-produced methodology to understand ‘real-world’ help-seeking in online peer–peer communities by young people experiencing emotional abuse and neglect

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Methodology case study - qualitative

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Young researchers guidance (Brady & Graham 2022)

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Young researchers guidance (Brady & Graham 2022)

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NIHR Involving children and young people as advisors in research: Top tips and essential key issues for researchers (2021)

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NIHR Involving children and young people as advisors in research: Top tips and essential key issues for researchers (2021)

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Authors: Co-producers at Co-Production Collective, EPPI Centre, UCL, Nottingham University 

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Value of Co-production: Rapid Critical Review

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Value of Co-production: Rapid Critical Review

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Young People in Research: Guidance for researchers from the PEAR young people’s public health group (2010)

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Young People in Research: Guidance for researchers from the PEAR young people’s public health group (2010)

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Adults but important reflections on health inequalities and expanding principles of co-production

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Nothing about us without us: A co-production strategy for communities, researchers and stakeholders to identify ways of improving health and reducing inequalities (Albert et al 2023)

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Nothing about us without us: A co-production strategy for communities, researchers and stakeholders to identify ways of improving health and reducing inequalities (Albert et al 2023)

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NSPCC: research with children ethics (participation focus)

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NSPCC: research with children ethics (participation focus)

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Once you have identified potential risks, you should establish how you can avoid or minimise them.

Explain research confidentiality and obtain consent

Before taking part, children should understand the nature of the research and what will be expected of them.

It is important to explain confidentiality to the child before they give their consent and at the beginning of the research process. Explain:

how you will use what they tell you

how you will keep that confidential

who else will see their data

when you will have to break confidentiality and the process that you will follow.

> Find out more about sharing information
Adapt the collection methodology

The way information is collected can minimise distress caused to children. For example:

position sensitive questions in the middle of an interview or focus group session to allow the children to warm up and cool down from these topics

take breaks during data collection

conduct the research in a friendly and comfortable environment

avoid times of day when support services aren't available.

Respond to distress and disclosures

It's important to have a clear plan for responding to children's distress or disclosures of harm to themselves or someone else.

You should have a process in place for referring child protection concerns. You should also provide information or encourage participants to seek help when an unmet need, such as a mental health concern, is disclosed.

Debriefing children at the end of the research can help identify any needs. This also provides another opportunity to refer participants to appropriate help or address any concerns.

Signpost to sources of further support

It is good practice to give children information about sources of support and remind them of these throughout the process.

A thank you leaflet containing information and contact details is particularly useful and should be given to all participants.

Childline provides confidential help and advice to children or young people. Calls to 0800 1111 are free and children can also contact Childline online. You can also download or order Childline posters and wallet cards.

Assess and mitigate risks to researchers

You should also consider the potential impact of research on the researchers.

If researchers feel affected by what is discussed during the sessions, they should seek support through supervision with their manager. It may also be helpful to direct them to the NSPCC helpline to talk about anything that is concerning them.

Research supervisors should ensure that proper attention is paid to the researcher's safety, particularly in lone working situations.
> Take a look at our guidance on lone working
Set out and approve your research plan

You should produce a research plan which clearly outlines, assesses and provides mitigation for potential risks.

Where possible, we recommend that plans for research with children are approved through a rigorous ethics review process by an appropriate ethics body.
> Read more about how the NSPCC approaches research governance

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Research with children: ethics, safety and promoting inclusion | NSPCC Learning

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Explains what researchers need to consider when involving children in their research and includes information on ethics in child research and identifying risks.

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Blog and links to different the Collective's approaches to look at impact

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What is the value of co-production? Co-production Collective (2022)

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What is the value of co-production? Co-production Collective (2022)

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Interactive summary:
https://assets.website-files.com/5ffee76a01a63b6b7213780c/635f0138190b083a3858f43d_ValueCoPro_InteractiveSummary31Oct22.pdf

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What is the value of co-production? | Co-Production Collective

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Over the last six months we have been working with several partners and 100s of co-producers to try to answer the question:

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Recruiting young people to sensitive research: turning the ‘wheels within wheels’ (Turner & Almack 2016)

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Recruiting young people to sensitive research: turning the ‘wheels within wheels’ (Turner & Almack 2016)

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Declaration of Helsinki Ethical Principles (Medical Research)

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Declaration of Helsinki Ethical Principles (Medical Research)

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Adopted by the 18th WMA General Assembly, Helsinki, Finland, June 1964
and amended by the:
29th WMA General Assembly, Tokyo, Japan, October 1975
35th WMA General Assembly, Venice, Italy, October 1983
41st WMA General Assembly, Hong Kong, September 1989
48th WMA General Assembly, Somerset West, Republic of South Africa, October 1996
52nd WMA General Assembly, Edinburgh, Scotland, October 2000
53rd WMA General Assembly, Washington DC, USA, October 2002 (Note of Clarification added)
55th WMA General Assembly, Tokyo, Japan, October 2004 (Note of Clarification added)
59th WMA General Assembly, Seoul, Republic of Korea, October 2008
64th WMA General Assembly, Fortaleza, Brazil, October 2013

1. The World Medical Association (WMA) has developed the Declaration of Helsinki as a statement of ethical principles for medical research involving human subjects, including research on identifiable human material and data.

The Declaration is intended to be read as a whole and each of its constituent paragraphs should be applied with consideration of all other relevant paragraphs.

2. Consistent with the mandate of the WMA, the Declaration is addressed primarily to physicians. The WMA encourages others who are involved in medical research involving human subjects to adopt these principles.

3. The Declaration of Geneva of the WMA binds the physician with the words, "The health of my patient will be my first consideration," and the International Code of Medical Ethics declares that, "A physician shall act in the patient's best interest when providing medical care."

4. It is the duty of the physician to promote and safeguard the health, well-being and rights of patients, including those who are involved in medical research. The physician's knowledge and conscience are dedicated to the fulfilment of this duty.

5. Medical progress is based on research that ultimately must include studies involving human subjects.

6. The primary purpose of medical research involving human subjects is to understand the causes, development and effects of diseases and improve preventive, diagnostic and therapeutic interventions (methods, procedures and treatments). Even the best proven interventions must be evaluated continually through research for their safety, effectiveness, efficiency, accessibility and quality.

7. Medical research is subject to ethical standards that promote and ensure respect for all human subjects and protect their health and rights.

8. While the primary purpose of medical research is to generate new knowledge, this goal can never take precedence over the rights and interests of individual research subjects.

9. It is the duty of physicians who are involved in medical research to protect the life, health, dignity, integrity, right to self-determination, privacy, and confidentiality of personal information of research subjects. The responsibility for the protection of research subjects must always rest with the physician or other health care professionals and never with the research subjects, even though they have given consent.

10. Physicians must consider the ethical, legal and regulatory norms and standards for research involving human subjects in their own countries as well as applicable international norms and standards. No national or international ethical, legal or regulatory requirement should reduce or eliminate any of the protections for research subjects set forth in this Declaration.

11. Medical research should be conducted in a manner that minimises possible harm to the environment.

12. Medical research involving human subjects must be conducted only by individuals with the appropriate ethics and scientific education, training and qualifications. Research on patients or healthy volunteers requires the supervision of a competent and appropriately qualified physician or other health care professional.

13. Groups that are underrepresented in medical research should be provided appropriate access to participation in research.

14. Physicians who combine medical research with medical care should involve their patients in research only to the extent that this is justified by its potential preventive, diagnostic or therapeutic value and if the physician has good reason to believe that participation in the research study will not adversely affect the health of the patients who serve as research subjects.

15. Appropriate compensation and treatment for subjects who are harmed as a result of participating in research must be ensured.

Risks, Burdens and Benefits

16. In medical practice and in medical research, most interventions involve risks and burdens.

Medical research involving human subjects may only be conducted if the importance of the objective outweighs the risks and burdens to the research subjects.

17. All medical research involving human subjects must be preceded by careful assessment of predictable risks and burdens to the individuals and groups involved in the research in comparison with foreseeable benefits to them and to other individuals or groups affected by the condition under investigation.

Measures to minimise the risks must be implemented. The risks must be continuously monitored, assessed and documented by the researcher.

18. Physicians may not be involved in a research study involving human subjects unless they are confident that the risks have been adequately assessed and can be satisfactorily managed.

When the risks are found to outweigh the potential benefits or when there is conclusive proof of definitive outcomes, physicians must assess whether to continue, modify or immediately stop the study.

Vulnerable Groups and Individuals

19. Some groups and individuals are particularly vulnerable and may have an increased likelihood of being wronged or of incurring additional harm.

All vulnerable groups and individuals should receive specifically considered protection.

20. Medical research with a vulnerable group is only justified if the research is responsive to the health needs or priorities of this group and the research cannot be carried out in a non-vulnerable group. In addition, this group should stand to benefit from the knowledge, practices or interventions that result from the research.

Scientific Requirements and Research Protocols

21. Medical research involving human subjects must conform to generally accepted scientific principles, be based on a thorough knowledge of the scientific literature, other relevant sources of information, and adequate laboratory and, as appropriate, animal experimentation. The welfare of animals used for research must be respected.

22. The design and performance of each research study involving human subjects must be clearly described and justified in a research protocol.

The protocol should contain a statement of the ethical considerations involved and should indicate how the principles in this Declaration have been addressed. The protocol should include information regarding funding, sponsors, institutional affiliations, potential conflicts of interest, incentives for subjects and information regarding provisions for treating and/or compensating subjects who are harmed as a consequence of participation in the research study.

In clinical trials, the protocol must also describe appropriate arrangements for post-trial provisions.

Research Ethics Committees

23. The research protocol must be submitted for consideration, comment, guidance and approval to the concerned research ethics committee before the study begins. This committee must be transparent in its functioning, must be independent of the researcher, the sponsor and any other undue influence and must be duly qualified. It must take into consideration the laws and regulations of the country or countries in which the research is to be performed as well as applicable international norms and standards but these must not be allowed to reduce or eliminate any of the protections for research subjects set forth in this Declaration.

The committee must have the right to monitor ongoing studies. The researcher must provide monitoring information to the committee, especially information about any serious adverse events. No amendment to the protocol may be made without consideration and approval by the committee. After the end of the study, the researchers must submit a final report to the committee containing a summary of the study's findings and conclusions.

Privacy and Confidentiality

24. Every precaution must be taken to protect the privacy of research subjects and the confidentiality of their personal information.

Informed Consent

25. Participation by individuals capable of giving informed consent as subjects in medical research must be voluntary. Although it may be appropriate to consult family members or community leaders, no individual capable of giving informed consent may be enrolled in a research study unless he or she freely agrees.

26. In medical research involving human subjects capable of giving informed consent, each potential subject must be adequately informed of the aims, methods, sources of funding, any possible conflicts of interest, institutional affiliations of the researcher, the anticipated benefits and potential risks of the study and the discomfort it may entail, post-study provisions and any other relevant aspects of the study. The potential subject must be informed of the right to refuse to participate in the study or to withdraw consent to participate at any time without reprisal. Special attention should be given to the specific information needs of individual potential subjects as well as to the methods used to deliver the information.

After ensuring that the potential subject has understood the information, the physician or another appropriately qualified individual must then seek the potential subject's freely-given informed consent, preferably in writing. If the consent cannot be expressed in writing, the non-written consent must be formally documented and witnessed.

All medical research subjects should be given the option of being informed about the general outcome and results of the study.

27. When seeking informed consent for participation in a research study the physician must be particularly cautious if the potential subject is in a dependent relationship with the physician or may consent under duress. In such situations the informed consent must be sought by an appropriately qualified individual who is completely independent of this relationship.

28. For a potential research subject who is incapable of giving informed consent, the physician must seek informed consent from the legally authorised representative. These individuals must not be included in a research study that has no likelihood of benefit for them unless it is intended to promote the health of the group represented by the potential subject, the research cannot instead be performed with persons capable of providing informed consent, and the research entails only minimal risk and minimal burden.

29. When a potential research subject who is deemed incapable of giving informed consent is able to give assent to decisions about participation in research, the physician must seek that assent in addition to the consent of the legally authorised representative. The potential subject's dissent should be respected.

30. Research involving subjects who are physically or mentally incapable of giving consent, for example, unconscious patients, may be done only if the physical or mental condition that prevents giving informed consent is a necessary characteristic of the research group. In such circumstances the physician must seek informed consent from the legally authorised representative. If no such representative is available and if the research cannot be delayed, the study may proceed without informed consent provided that the specific reasons for involving subjects with a condition that renders them unable to give informed consent have been stated in the research protocol and the study has been approved by a research ethics committee. Consent to remain in the research must be obtained as soon as possible from the subject or a legally authorised representative.

31. The physician must fully inform the patient which aspects of their care are related to the research. The refusal of a patient to participate in a study or the patient's decision to withdraw from the study must never adversely affect the patient-physician relationship.

32. For medical research using identifiable human material or data, such as research on material or data contained in biobanks or similar repositories, physicians must seek informed consent for its collection, storage and/or reuse. There may be exceptional situations where consent would be impossible or impracticable to obtain for such research. In such situations the research may be done only after consideration and approval of a research ethics committee.

33. The benefits, risks, burdens and effectiveness of a new intervention must be tested against those of the best proven intervention(s), except in the following circumstances:

Where no proven intervention exists, the use of placebo, or no intervention, is acceptable; or

Where for compelling and scientifically sound methodological reasons the use of any intervention less effective than the best proven one, the use of placebo, or no intervention is necessary to determine the efficacy or safety of an intervention

and the patients who receive any intervention less effective than the best proven one, placebo, or no intervention will not be subject to additional risks of serious or irreversible harm as a result of not receiving the best proven intervention.

Extreme care must be taken to avoid abuse of this option.

Post-Trial Provisions

34. In advance of a clinical trial, sponsors, researchers and host country governments should make provisions for post-trial access for all participants who still need an intervention identified as beneficial in the trial. This information must also be disclosed to participants during the informed consent process.

Research Registration and Publication and Dissemination of Results

35. Every research study involving human subjects must be registered in a publicly accessible database before recruitment of the first subject.

36. Researchers, authors, sponsors, editors and publishers all have ethical obligations with regard to the publication and dissemination of the results of research. Researchers have a duty to make publicly available the results of their research on human subjects and are accountable for the completeness and accuracy of their reports. All parties should adhere to accepted guidelines for ethical reporting. Negative and inconclusive as well as positive results must be published or otherwise made publicly available. Sources of funding, institutional affiliations and conflicts of interest must be declared in the publication. Reports of research not in accordance with the principles of this Declaration should not be accepted for publication.

Unproven Interventions in Clinical Practice

37. In the treatment of an individual patient, where proven interventions do not exist or other known interventions have been ineffective, the physician, after seeking expert advice, with informed consent from the patient or a legally authorised representative, may use an unproven intervention if in the physician's judgement it offers hope of saving life, re-establishing health or alleviating suffering. This intervention should subsequently be made the object of research, designed to evaluate its safety and efficacy. In all cases, new information must be recorded and, where appropriate, made publicly available.

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WMA - The World Medical Association-WMA Declaration of Helsinki - Ethical Principles for Medical Research Involving Human Subjects

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Adopted by the 18th WMA General Assembly, Helsinki, Finland, June 1964 and amended by the: 29th WMA General Assembly, Tokyo, Japan, October 1975 35th WMA General Assembly, Venice, Italy, October 1983 41st WMA General Assembly, Hong Kong, September 1989 48th WMA General Assembly, Somerset West, Republic of South Africa, October

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A square peg in a round hole: Patient and public author affiliations in academic journals (blog)

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A square peg in a round hole: Patient and public author affiliations in academic journals (blog)

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by: Dawn P. Richards (patient partner and Five02 Labs Inc, Toronto, Ontario, Canada) and Jim Elliott (independent advocate for patients in research, Wales, UK)

As more research teams include patient and public authors in their work, the topic of affiliation for these authors is coming to light. The academic publishing model is one which assumes that most, if not all, authors have an academic, health services or industry-based affiliation, however patient and public authors do not necessarily fit this mold. Given that research is bringing to light journal Editors-in Chief beliefs related to patient partner authorship (1), work that identifies how patient partners may meet International Committee of Medical and Journal Editors' criteria for authorship in patient engagement and patient-oriented research projects (2), and most recently, a study on identifying scientific articles that include patient partner authors (3), we feel this is a timely discussion. Here we share our thoughts on this evolving situation, provide solutions for teams that include these types of authors, and issue a call to action for journal editors.

Patients and public authors, should they wish to be publicly cited as such in publications, should have an opportunity to choose their preferred type of affiliation. Currently it appears that many patient and public authors are affiliated with a patient organisation to which they belong or the organisation that carried out the research highlighted by the publication. While this may work for some patient and public authors, we argue that this is not the case for all patient and public authors, some of whom may wish to not have an institutional affiliation or who don't have an institutional affiliation. In fact, for some patient and public authors, needing to affiliate with the institution that is leading the research may not be appropriate. While these individuals may have received some form of compensation for their contribution to the project highlighted in the publication, they are rarely under employment contract to these institutions and certainly rarely act or speak on behalf of the institution. To call these authors affiliated with these institutions may not be the correct interpretation of the relationship. Most patient partners bring an independent perspective to the research they get involved with and may feel that could be compromised by being affiliated to the institution. Being a co-author is a form of reward and recognition for the contribution patient and public authors have made to the research.

We propose that these patient and public authors should be able to choose their own affiliations and it is the responsibility of the lead author to offer that. We have recently seen some patient and public authors choose to list their affiliation as 'patient partner' or 'patient research partner' (4,5), or as the location where they live (6). We further suggest that terms such as 'public partner' (7) 'independent patient or public partner,' and others may be useful affiliations. In the event that patient and public authors do have affiliations that make sense for their situations, we also feel that appropriately highlighting that patient and public members have contributed to the work of the publication is important (3).

We are bringing this issue to light because we feel strongly about contributing to the science and knowledge related to patient and public engagement and involvement. This is an emerging field, and it is important to realize that current processes and systems do not easily accommodate patient and public involvement. As the field of patient and public involvement in research, healthcare, and health policy continues to evolve, so does the importance of being able to understand how and if patient and public partners have contributed to this work, in what ways, and how. Current tools such as the GRIPP (8) and GRIPP2 (9) reporting tools are helpful, as are simple approaches such as detailing who patient and public partners are within the contributions section of publications. Whilst that is clearly important, the contributions section is usually placed at the end of most papers and may be missed by some readers. We feel that it is important that the contribution of patient and public authors is made more visible through an appropriate affiliation on the first page. Moving towards this as a choice for all patient and public contributors to research will start to reveal the full extent and impact of the contributions they make, which has hitherto been far from clear in journal papers (10). The lack of a clear way to indicate that one or more co-authors is a patient and public author leads to an underreporting of the numbers of patient and public partners who have contributed to the writing of published papers. It might also give the impression that patient and public authors lack the skills to do this or that they are not interested, neither of which is true in our experience.

With this context, we issue a call to action to journal editors to develop an approach to help ensure that patient and public authors who want to be recognised as such can use an affiliation of their choice. At its most basic form, journal submission software should offer flexibility to allow for this type of 'affiliation.' A more advanced exercise would be to develop guidance for lead authors in collaboration with patient and public contributors who have been co-authors of published papers. Specific approaches might need to be developed for academic, commercial and health services organisations that offer some options for appropriate affiliations.

L'affiliation des patients et du public dans les articles scientifiques : une ambiguïté gênante
Par Dawn P. Richards, patiente partenaire et fondatrice de Five02 Labs à Toronto en Ontario (Canada) et Jim Elliott, défenseur des droits des patients dans la recherche au pays de Galles (Royaume-Uni)
La contribution de patientes, de patients et de membres du public à la rédaction d'articles scientifiques se généralise et projette sur le devant de la scène la question épineuse de leur affiliation. Il est en effet tenu pour acquis que les personnes qui soumettent des articles scientifiques exercent professionnellement dans le milieu de la recherche universitaire, dans les services de santé ou dans l'industrie et possèdent à ce titre une affiliation à un établissement, ce qui ne s'applique pas aux patientes, aux patients et aux membres du public. Au regard des idées reçues d'un certain nombre de rédactrices et rédacteurs en chef à l'égard des articles qui portent la signature de patientes et patients partenaires (1), des conditions de publication que l'International Committee of Medical Journal Editors impose à ces personnes en cas de participation à des projets de mobilisation ou de recherche axée sur le patient (2) et plus récemment d'une étude centrée sur les articles scientifiques en copublication par des patientes et patients partenaires (3), nous estimons que le temps est venu de traiter le sujet. Dans les paragraphes qui suivent, nous exprimons notre position sur une situation en constante évolution, offrons des recommandations aux équipes souhaitant s'appuyer sur des auteures et auteurs présentant un tel profil et lançons un appel à l'action à l'intention des rédactions des revues scientifiques.

Les personnes qui souhaitent publier des articles en qualité de patientes, patients ou membres du public devraient être libres de choisir l'affiliation qui correspond à leur situation. À l'heure actuelle, nombre d'entre elles sont affiliées à l'organisation de patients qui les représente ou à l'établissement qui pilote le projet de recherche auquel elles participent. Si cette affiliation reflète dans certains cas la véritable nature des rapports établis, nous considérons que cela ne concerne pas l'ensemble des patientes, patients ou membres du public qui écrivent des articles et que ces personnes sont en droit de ne pas être affiliées à un établissement. Cette procédure n'est d'ailleurs pas toujours la voie à suivre. Si les établissements responsables des projets mis en exergue dans un article scientifique rémunèrent parfois les patientes, patients ou membres du public qui y ont participé, cela ne signifie en effet pas pour autant qu'ils le font dans le cadre d'un contrat de travail ou qu'ils accordent à ces personnes une autorisation d'agir ou de s'exprimer en leur nom. En de telles circonstances, considérer qu'il existe une relation d'affiliation serait pour le moins inexact. De plus, la plupart des patientes et patients partenaires apportent des points de vue uniques aux équipes qui sollicitent leur aide et perçoivent la copublication d'un article comme une forme de récompense et de reconnaissance des efforts qu'elles déploient au service de la recherche. Une affiliation à l'établissement responsable du projet pourrait en ce sens entraver leur sentiment d'indépendance intellectuelle.

À la lumière de ces observations, nous recommandons que les patientes, patients et membres du public participant à la rédaction d'articles scientifiques aient la liberté de choisir leur affiliation en toute indépendance et qu'il revienne à l'auteure principale ou à l'auteur principal de ces articles de la leur offrir. Nous avons récemment remarqué que les noms de " patient partenaire ", de " patient partenaire à la recherche " (4, 5) et même du lieu de résidence (6) figurent parmi les affiliations choisies. Les termes " partenaire du public " (7) et " patient indépendant ou partenaire du public " méritent également considération. Dans les cas où l'affiliation de patientes, patients ou membres du public à un établissement est parfaitement légitime, nous estimons que la reconnaissance en bonne et due forme de leur contribution à la rédaction de l'article publié est tout aussi importante (3).

Nous nous exprimons sur ce sujet en raison de l'importance que nous accordons à la science de la mobilisation et de l'implication du public, des patientes et des patients dans la recherche. Cette approche vit ses premières heures, mais il est d'ores et déjà essentiel de prendre conscience que les processus et systèmes de publication actuels sont particulièrement rigides à l'encontre des personnes qui ne possèdent pas d'affiliation. À mesure que la mobilisation du public, des patientes et des patients dans la recherche, les pratiques de soins et les politiques de santé prendra de l'ampleur, il deviendra essentiel de disposer de moyens permettant d'évaluer précisément leur contribution aux travaux menés. Les outils actuels, qui suivent le modèle GRIPP (8) et GRIPP2 (9), prouvent leur utilité, tout comme les approches simples consistant à offrir, dans la section Contributions des articles, des informations sur l'identité et l'apport des patientes, patients et membres du public à leur rédaction. Malgré son importance, nous notons néanmoins que cette section est généralement placée à la fin des articles et tend à ne pas attirer l'œil du lectorat, raison pour laquelle nous recommandons qu'elle bénéficie d'une meilleure exposition sur la première page. Une telle décision en faveur du public, des patientes et des patients qui participent à la recherche permettrait de souligner sans équivoque leurs contributions, ce qui, en l'état actuel des choses, serait une petite révolution (10), d'autant plus que l'absence de consensus autour de la question de la mise en évidence du statut de patiente, de patient ou de membre du public dans la copublication d'articles se traduit par une sous-estimation de leur nombre réel et donne en outre l'impression que ces personnes ne possèdent pas les compétences requises pour écrire des articles ou que l'exercice ne les intéresse tout simplement pas, ce qui dénote un décalage net avec la réalité que nous observons.

Dans ce contexte, nous appelons l'ensemble des rédactions des revues scientifiques à mettre au point une approche qui accordera aux personnes qui contribuent à la publication d'articles à titre de patientes, de patients et de membres du public la liberté de choisir leur affiliation. Au minimum, les logiciels de soumission d'articles scientifiques devraient offrir à ces personnes la possibilité de sélectionner le type d'affiliation qui correspond à leur situation. Bien que l'exercice soit plus complexe, l'idéal serait toutefois d'établir des lignes directrices à l'intention des auteures principales et auteurs principaux qui publient leurs articles en collaboration avec des patientes, des patients ou des membres du public. Des approches adaptées aux besoins des établissements universitaires, des organismes du secteur commercial et des services de santé qui proposent des possibilités d'affiliation justes pourraient également être étudiées.

References / Références

1. Cobey, K.D., Monfaredi, Z., Poole, E. et al. Editors-in-chief perceptions of patients as (co) authors on publications and the acceptability of ICMJE authorship criteria: a cross-sectional survey. Res Involv Engagem 7, 39 (2021). https://doi.org/10.1186/s40900-021-00290-1

2. Richards, D.P., Birnie, K.A., Eubanks, K. et al. Guidance on authorship with and acknowledgement of patient partners in patient-oriented research. Res Involv Engagem 6, 38 (2020). https://doi.org/10.1186/s40900-020-00213-6

3. Oliver, J., Lobban, D., Dormer, L. et al. Hidden in plain sight? Identifying patient-authored publications. Res Involv Engagem 8, 12 (2022). https://doi.org/10.1186/s40900-022-00346-w

4. Richards, D.P., Jordan, I., Strain, K., Press, Z. Patients as Partners in Research: How to Talk About Compensation With Patient Partners, Journal of Orthopaedic & Sports Physical Therapy, 50, 8 (2020). https://www.jospt.org/doi/10.2519/jospt.2020.0106

5. Richards, D.P., Cobey, K.D., Proulx, L. et al. Identifying potential barriers and solutions to patient partner compensation (payment) in research. Res Involv Engagem 8, 7 (2022). https://doi.org/10.1186/s40900-022-00341-1

6. Tembo D, Hickey G, Montenegro C, Chandler D, Nelson E, Porter K et al. Effective engagement and involvement with community stakeholders in the co-production of global health research BMJ 2021; 372 :n178 doi:10.1136/bmj.n178

7. Newlands, R., Duncan, E., Presseau, J. et al. Why trials lose participants: A multitrial investigation of participants' perspectives using the theoretical domains framework. J. Clin. Epidemiol. March 12, 2021, https://doi.org/10.1016/j.jclinepi.2021.03.007

8. Staniszewska, S., Brett, J., Mockford, C., & Barber, R. (2011). The GRIPP checklist: Strengthening the quality of patient and public involvement reporting in research. International Journal of Technology Assessment in Health Care, 27(4), 391-399. doi:10.1017/S0266462311000481

9. Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research BMJ 2017; 358 :j3453 doi:10.1136/bmj.j3453

Public Involvement in Research Impact Toolkit (PIRIT). See section on 'The difference public contributors make to the research outcomes and dissemination of results'https://www.cardiff.ac.uk/marie-curie-research-centre/patient-and-public-involvement/public-involvement-in-research-impact-toolkit-pirit

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A square peg in a round hole: Patient and public author affiliations in academic journals

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by: Dawn P. Richards (patient partner and Five02 Labs Inc, Toronto, Ontario, Canada) and Jim Elliott (independent advocate for patients in research, Wales, UK) As more research teams include patient and public authors in their work, the topic of affiliation for these authors is coming to light.

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NIHR: Guidance on co-producing a research project (Coldham, 2021)

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NIHR: Guidance on co-producing a research project (Coldham, 2021)

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What is public involvement in research?

Public involvement in research means research that is done 'with' or 'by' the public, not 'to', 'about' or 'for' them. It means that patients or other people with relevant experience contribute to how research is designed, conducted and disseminated.

It does not refer to research participants taking part in a study.

Public involvement is also different from public engagement, which is when information and knowledge about research is shared with the public. Read about our Transparency Agenda for further information about why this is important.

We are committed to supporting and encouraging researchers to involve patients and the public in their work at the earliest opportunity.

Research teams which involve patients and the public run better studies because:

they are more relevant to participants

they are designed in a way which is acceptable to participants

they have participant information which is understandable to participants

they provide a better experience of research

they have better communication of results to participants at the end of the study.

Four principles for meaningful involvement of patients and the public in health and social care research:

1. Principle 1: Involve the right people

2. Principle 2: Involve enough people

3. Principle 3: Involve those people enough

4. Principle 4: Describe how it helps

Public involvement in COVID-19 research

Public involvement is as important in COVID-19 research as it is in other health and social care research. You can read our statement about this here.

Patients, carers, service users, and other members of the public around the UK have adapted to working remotely and rapidly in order to contribute to the design, conduct, and dissemination of COVID-19 research. We strongly encourage applicants for fast track review to involve people with relevant lived experience in their research using our four Best Practice Principles for public involvement.

If you don't already have connections with public involvement groups, networks, or individuals, the HRA is here to help. When you contact us about fast track review we will ask about your public involvement plans. If needed, our public involvement team can contact you to help identify:

who the most suitable people are to involve in your research

what it will be most useful for them to do

how quickly you need their input

Then we will try to put you in touch with people who coordinate groups that might be interested in working with you.

Why does it matter?

The Health Research Authority protects and promotes the interests of patients and the public in health and social care research. Involving people with relevant lived experience in the design and development of research can improve its quality and relevance.

The Health Research Authority and the National Institute of Health Research INVOLVE have published a briefing on the evidence for how public involvement can have an impact on research. It explains how public involvement in research, especially at the design stage, can support the ethical review process by helping to:

make research more relevant - so that the research results are more likely to benefit patients and the public

define what is likely to be acceptable to participants - particularly in controversial or sensitive research

improve the informed consent process - making it easier for prospective participants to understand the research and its potential risks and benefits

improve the experience of participating in research - checking that the practical arrangements for participants are appropriate and a respectful use of people's time

improve the communication of findings to participants and the wider public - providing information on the progress of the research as well as the final results.

Good public involvement is worth investing in. It can lead to the development of higher quality research and make it easier to recruit and retain participants. This is because the research is more likely to be designed and conducted in a way which is acceptable to them. Involving the right people well can help to produce research which respects the rights, safety, dignity and wellbeing of participants, which in turn may help to address issues which the Research Ethics Committees (RECs) consider in their reviews. This can contribute positively to the ethical review process, such as by making it less likely that there will be revisions needed to participant information sheets or other documents.

The HRA involves the public in our own work. Please contact our Public Involvement Team at public.involvement@hra.nhs.uk if you would like to find out more.

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A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards (Pandya-Wood et al 2017)

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A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards (Pandya-Wood et al 2017)

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Public involvement policy

The Breaking the Boundaries strategic review of public involvement in the NIHR in 2014 resulted in the Going the Extra Mile (GEM) [ 14] report. This highlighted 11 recommendations for new ways of working in public involvement but none cover ethical conduct at the research design stage. At an operational level, our frontline experience of research design work suggests that ethical issues can and do arise at the research design stage. Sensitive and ethical working is required to ensure that research design stage activities are rooted in good practice and informed by first-hand experiences of the public who have been involved at this stage.

Statutory policies relating to the ethical conduct of health and social care research

The Health Research Authority (HRA) and the Devolved Administrations for Wales, Scotland and Northern Ireland have consulted on and will shortly be issuing a new UK Policy Framework for Health and Social Care Research [ 15] which will replace the Research Governance Framework for Health and Social Care [ 12]. The new policy framework (shortly to be introduced) sets out the high-level principles of good practice in the management and conduct of health and social care research in the UK, as well as the responsibilities that underpin high-quality ethical research. Part of this is the requirement for health and social care researchers conducting most types of research in the NHS to submit their study for ethical review by an NHS Research Ethics Committee (REC) within the UK Health Departments' Research Ethics Service. The Research Ethics Service (RES) is a core function of the HRA and is committed to enabling and supporting ethical research in the NHS. The RES is not responsible for university research ethics committees, although they work to similar standards and governance procedures, and they are not included in what we refer to as ethical or REC approval in this paper. The RES has two functions: 1) to protect the rights, safety, dignity and wellbeing of research participants and 2) to facilitate and promote ethical research that benefits participants, science and society [ 16]. The HRA clearly value public involvement stating that "involving patients and the public in health research will improve it by ensuring it is relevant to the needs of patients and more likely to have an impact on their health and wellbeing." [ 17] (para B2; p.14).

The current Research Governance Framework and new policy frameworks are the only policies that cover what researchers do in designing new research studies (through the responsibilities of chief investigators, research teams, sponsors and employers). However, they do not contain anything specifically focused on how researchers work with the public to design and then conduct their studies.

RECs review applications for research and give an opinion about whether the proposed research is ethical and will protect the rights, safety, dignity and wellbeing of research participants. RECs also consider the safety and well-being of researchers and whether they have the relevant skills and experience to both conduct the research and to assess and deal with possible risks. Any ethical issues related to how researchers work with the public will be considered with respect to how the proposed research will be conducted rather than how the public were involved in designing it.

Ethical approval should in theory only be granted if everything that has led up to the application has been done in an ethically acceptable way. However, ethical review happens quite late in the research cycle, after funding has been approved, and the process focuses on what the research will do and not on how it was designed. We know through our own work that ethical, good practice and governance issues can, and do arise early on at the research design stage. REC approval is granted on the understanding that ethical principles are understood by researchers throughout the research cycle, but we are concerned that there is no existing specific policy or guidance relating to public involvement at the research design stage.

Guidance relating to public involvement in research and research ethics committee review and potential areas of confusion

In May 2016, the HRA and INVOLVE issued an updated joint statement on public involvement in research and research ethics committee review highlighting that:

"You do not need to apply for ethical approval to involve the public in the planning or the design stage of research... even when those people are approached for this role via the NHS..." [ 18] (p.2).

There is an inherent risk that, when communicating that ethical approval for public involvement in the research design stage is not required, the message researchers may hear is that there are no ethical issues to be considered with respect to the public involvement at this stage. However, it is simply that public involvement activity in the research design stage does not fall within the statutory responsibilities of a REC, not that there are no ethical issues to consider. The point we make is that all formal good practice checks come only after funding is obtained rather than before and our concern is that sometimes ethical oversights might occur if the researcher is not mindful of the issues we highlight in the framework. Our observations from advising researchers at the research design stage suggest that ethical issues can occur in health and social care research much earlier than when a decision is made to fund the study.

There may also be researchers who are concerned that having close contact with people during the research design stage may by default require ethical approval since this level of contact with the public (who are also patients) may be no different to collecting research data. It is possible that some researchers are unaware of the HRA and INVOLVE joint statement. The update and clarification of the statement by the HRA and INVOLVE are, in part, welcome but wider communication may still be necessary, particularly, that ethical approval is not required at the research design stage.

Our proposed framework intends to clarify this grey area and could, once it has gained wider consultation and acceptance, be endorsed and signposted by the HRA and INVOLVE. If the framework is endorsed in this way and becomes widely and voluntarily used in a self-regulatory way, there is no need for a new formal process for reviewing public involvement in the research design stage.

The early involvement of the public at the research design stage is regarded by many as being valuable [ 5] and is clearly valued by INVOLVE and the HRA. For example, the briefing note that was issued to accompany the new HRA and INVOLVE joint statement on the 'impact of public involvement on the ethical aspects of research' [ 19] stresses that:

"Public involvement right at the beginning of a project helps researchers to identify new research topics and to modify their research questions...Involving the public early on...also helps researchers design and conduct their research in a way that potential participants consider to be ethically acceptable." [ 19] (p.2).

However, while public involvement is recognised by INVOLVE and the HRA in helping to produce more "ethically acceptable" research there is no guidance pertaining to the ethical conduct of the research design stage concerning public involvement itself.

The new HRA and INVOLVE briefing note and joint statement highlights situations where the involvement of the public can pose ethical concerns. However, all the scenarios listed (e.g. helping to conduct interviews) relate to contact with participants or study data and would only happen once the study is funded and underway and not at the research design stage. Although researchers are required to detail in their ethical review application form how the public have contributed to the design of the study, the focus of ethical review is the future operation and conduct of the research and on "...how the public will be involved in...the research" [ 18] (p. 2, italics added), rather than how they have been involved at the research design stage.

The public involvement activities we focus on at the research design stage include the involvement of the public in the 'design and development of research', which is not covered by ethical review. This is partly because of the REC focus on how the research will be conducted and partly because there is rarely any detailed information included in an application that would give a REC cause for concern about the way that researchers have worked with the public. The HRA and INVOLVE joint statement says that "Involving the public in the design and development of research does not generally raise ethical concerns" [ 18]. However, our proposed framework currently highlights 10 potential areas related to the research design stage where we have observed ethical issues and which are related to the ways that researchers work with the public. There may well be others we have yet to be made aware of via further consultation.

Differentiating between public involvement activities and qualitative research methods

In our experience, some researchers are unclear about the distinction between qualitative research methods and public involvement activities. It is possible that if researchers believe they are undertaking "interviews" when they are actually consulting the public at the research design stage then they may, erroneously, believe they require ethical approval. Defining and referring to information collected during public involvement consultations as "data" [ 20] is not very helpful and ethically is confusing. The use of language to refer to the research design stage is a point we address in the proposed framework and should help allay these concerns. Conscious attempts by researchers to deliberately combine qualitative research methods with public involvement early on [ 20] are, we believe, misguided. Any apparent "interface" between public involvement and qualitative research would be best acknowledged but kept separate. Engaging the public as research participants and treating their verbal contributions as data would always, in our minds, necessitate the gaining of ethical approval. This would, we believe, also apply if the information gained from consulting the public in the research design stage is presented as qualitative research data. The next iteration of the INVOLVE/HRA joint statement could be broadened to clarify these issues. We think this would be helpful.

In addition, the potential may be heightened for the public to be confused (or misled) at any time regarding their roles. Are the public always clear, for example when public involvement and qualitative research methods are being combined? More importantly are they clear when they are contributing through a public involvement role and when they are engaged as research participants? Researchers need to be clear about their purpose in consulting the public. If it is to acquire information to answer, in some way or other, their research question (s) then what they are doing is research and it needs ethical approval. However, if it is to help them design, conduct and or manage their study then that is involvement and does not need ethical approval.

The literature supporting our case

We scoped the available literature for guidance explicitly addressing good practice (or what we refer to as ethically conscious) public involvement at the research design stage but we could not find anything. This adds support to our view that the issues we raise are being overlooked. However, we found four papers that discussed good practice concerning ethical issues related to public involvement in general.

Eight ethical considerations when involving the public in research were devised by Wright et al. [ 21] and accompanies their critical appraisal guidance as a standalone resource (p. 365). This resonates with good public involvement practice, but was designed for use by funders or journal reviewers (i.e. once the public involvement activities have already taken place). They were not intended, as far as we are aware, to specifically help guide the development of the research design stage as we are suggesting with our framework. However, we acknowledge useful elements contained in Wright et al's [ 21] 'ethical considerations' but we feel the research design stage still requires its own ethical focus. Wright et al' s [ 21] guidance is being further developed to include assessments of funding proposals including ethical issues in research design [ 22].

INVOLVE's Values and Principles Framework [ 2] covers six areas for organisations, researchers and the public to consider for involvement at any stage of the research. While reference is made within the framework to the research design stage or "ideas phase" of research, it is meant for use across the life cycle of research. Brief mention is made of the need to involve the public from the outset (including being involved in the protocol development and ethics application) and to acknowledge their contribution. While the values and principles framework contains much of value only a few of the values resonate with the best practice we are proposing. Uniquely, our framework focuses solely on the research design stage, or "ideas phase", which we believe requires quite separate and specific attention.

The above literature helps to contextualise our proposed framework and highlights its unique position in the discussions regarding the research design stage. We know that there is a gap in dealing with ethical issues at this stage and our framework complements existing information. Our concern is that ethically conscious approaches to public involvement at the research design stage require clarity. There is little value in attempting to replicate other work that overlaps with our own. Our proposed framework could be readily incorporated into existing public involvement toolkits that aim to aid the planning, support and evaluation of public involvement and could be sign-posted as an additional resource within other documents or toolkits, (e.g. in the pilot clinical trials public involvement toolkit [ 23]). Website links to other useful resources within our proposed framework have been included (see Table 1). Feedback on additional useful resources that could be signposted within our framework would be welcomed.

Table 1 An ethically conscious framework for public involvement at the research design stage

An ethically conscious framework for public involvement at the research design stage

The following 10 ethical issues relating to involving the public have been observed at the research design stage by the authors and confirmed in various public involvement discussions and workshops. We flag them as points of concern, and suggest that our accompanying framework could address each of them in turn. The issues we highlight are examples drawn from working with researchers or experienced by the public who have been involved at the design stage. The framework has been formulated to address potential ethical issues at the research design stage sequentially in the order that we think they are most likely to arise in practice. Each of the issues is illustrated with a scenario drawn from real situations we have observed. As indicated above, we looked for references to each issue grounded in established principles, frameworks or codes of conduct but were unable to find any that deal specifically with the relationship between professional researchers and public contributors. The sources we found are concerned with the relationship between either health and social care professionals and their patients or service users or between professional researchers and participants in their studies. However, we have cited principles we found that are transferrable and relevant to the relationship between professional researchers and public contributors. Feedback on the framework order and structure would also be welcome.

Allocating sufficient time for public involvement

This idea of allocating sufficient time for public involvement in research ethics is not grounded in any previous ethical principles we have come across; however, we believe that this idea is embedded in the fundamental ethical principle of respect [ 2, 28]. The ethical issue we have observed: " Can you ask two people in your group to read this by tomorrow. I am submitting the bid the next day" ( Researcher).

Avoiding tokenism

The issue of tokenism in research ethics concerning public involvement was raised in Ward et al., 2009 [ 30] as well as being embedded in the fundamental ethical principle of respect [ 28].

The ethical issue we have observed: " The patients' group didn' t really get what we are doing so I haven' t included their suggestions in the bid." ( Researcher).

There are concerns that public involvement is frequently undertaken in a tokenistic manner [ 21]. Demonstrating involvement in funding applications is sometimes treated by researchers as unimportant and a 'box ticking' exercise [ 31, 32]. The new National Institute for Health Research (NIHR) Research for Patient Benefit (RfPB) 2 stage application process (which came in to effect in December 2015) in which public involvement is detailed at stage 1 in an involvement tick box is regarded by some as retrograde since no additional written evidence is required. In addition, researchers declaring that they have undertaken public involvement 'consultations' (i.e. one of the RfPB tick box options) may be treated by some as one of the 'easiest' of the three recognised ways (i.e. consultation, collaboration and user-led) in which people can be involved at the research design stage [ 33]. Choosing the 'consultation' tick box option should not be a convenient way of getting public involvement 'brownie points'. One way of demonstrating good practice is by explaining in the research application how exactly research design public involvement has occurred and what difference it made to the proposal. Detailing who was involved and what they did along with exactly how the input was used, and how it shaped the research proposal should be woven throughout the relevant sections of a funding application form. Guidance from funders such as the NIHR on where and how to "weave" public involvement throughout the funding proposal to substantiate the tick box information would be useful.

Registering of research design stage public involvement work early with NHS Research and Development (R&D) Trust Office

The registering of public involvement in R&D is a governance issue and we believe grounded in the fundamental ethical principles of safety [ 12, 15] and transparency [ 34, 35]. The ethical issue we have observed: " I don' t need to inform my R&D office of my public involvement activity until the research gets funded" ( Researcher).

Early registering of research design stage public involvement work with NHS Trust Research and Development (R&D) offices should afford the researchers with practical and administrative support around local governance arrangements. R&D offices may be able to facilitate advice on NHS indemnity and whether specific statements apply to cover groups, such as non-employees or members of the public. However, 'blanket cover' should not be assumed (e.g. GPs are independent contractors and have their own indemnity providers). R&D offices are likely to be keen to be informed of any research design stage consultation funding awarded for public involvement activities (e.g. RDS Public Involvement Funds) since they will be responsible for the timely reimbursement of the public involved. INVOLVE recommend that organisations and researchers include the governance of public involvement in their research accountability policies (Value 6: Accountability) [ 2]. We believe these policies should be made explicit and include the research design stage. Early involvement and support from the Research and Governance infrastructure will also be valuable when planning public involvement as co-researchers throughout a study and the accompanying organisational and administrative issues this pose.

Communicating clearly from the outset

The idea behind clear communication in research is grounded in the fundamental ethical principle of transparency [ 34], where research is open to public scrutiny through the publication of protocols and all results [ 35],. The ethical issue we have observed: " I was pleased to be involved early on but I really did not understand what I was being asked to do. Not enough effort was made to explain things to me. I felt left out of the discussions". ( Public contributor).

The public involved at the research design stage require the same information as the rest of the research team, but communicated in ways that they can access and understand. Potentially, not clarifying expectations early on can deter people from getting involved at the research design stage [ 36]. Details of the commitment required and potential burden of public involvement activities should also be communicated early on [ 5]. Providing adequate information about the study and about involvement roles and responsibilities verbally and/or in print is necessary and appropriate and helps people make informed decisions about becoming involved in the first instance and is likely to help them remain involved [ 5]. This may also include the necessity for clear communication early on about planned roles for the public as members of the research team (e.g. as co-researchers) in order to be clear about expectations later in the study and how people may require support to undertake these roles [ 37]. Linked to the issue of clear communication is a researcher's need for facilitation skills (which differ to clinical interactions), to effectively capture all contributions when involving the public especially when some people may be more dominant than others [ 5].

Entitling public contributors to stop their involvement for any unstated reasons

In research ethics, the idea of withdrawing from research is a well-grounded fundamental ethical principle for participants in studies and concerns respecting people's wishes to stop doing something that they no longer wish to do [ 34, 38]. While the focus of that is on research participants the principle is equally relevant to public contributors or other members of a research team. The ethical issue we have observed: A member of the public saying to a research colleague, " I have agreed to help design a study but I really feel overwhelmed by the amount of things they are asking me to do, I honestly haven' t got any more time and don' t want to continue but I feel like I have to help because I said I would - Initially they said it would be one meeting and so far I have had four two- hour long meetings with them". ( Public contributor).

It is important that the public know that they can stop their involvement at any time and without detailing their reasons for so doing (in a similar way that applies to research participants). Following number 4 above, this may be a issue if roles and expectations have not been adequately communicated early on. It should be made explicit from the outset that the public can stop their involvement at any time.

Operating 'fairness of opportunity'

The value of fairness is enshrined in equalities legislation. Researching diverse groups and individuals falls within the fundamental ethical principle of respect [ 28], which includes equality of opportunity [ 35]. The ethical issue we have observed: " My study is about young black and minority ethnic children but I can' t find any." ( Researcher).

The backgrounds of who is involved at the research design stage are important to consider. If a research question is specific to a group or community, it is in the researcher's interests to specifically seek to engage that community. Similarly, if the research question affects a broad group of people then the researcher needs to involve a broader group, considering inclusivity and diversity. INVOLVE define inclusivity and diversity as 'respecting and valuing all forms of difference in individuals' [ 39]. People differ in all sorts of ways which may not always be obvious or visible. These differences might include race and ethnicity, culture and belief, gender and sexuality, age and social status, ability and disability and use of health and social care services.' [ 39] Awareness of issues concerning diversity and inclusivity demonstrates to people and the wider research team that the research being planned is to be conducted in an empowering and anti-discriminatory way. Diversity and inclusion are key challenges INVOLVE has highlighted in GEM that suggest that sometimes public involvement practice "...was perceived as being exclusive and not always fully meeting the requirements and goals of equality legislation." [ 14] (p.39). Building inclusivity and diversity in to an ethically conscious approach to research design stage public involvement could help ensure that equality and anti-discriminatory practice is deeply rooted into the design of the research and therefore benefiting health for all. We have aligned this principle with GEM [ 14] replacing 'diversity and inclusivity' with 'fairness of opportunity' to better reflect these over-arching ideals. The issue of who best to include would need to also consider whether and when to include members of the public and/or those with lived experience of the condition the researcher is focusing on (e.g. when ensuring the relevance of the contents of a participant information sheet [ 40]). Consideration of matching the health experiences of the public involved with those of the target study participants therefore should be given, but in ways that do not disclose confidential or personal information in a stigmatising manner [ 40].

Differentiating between public involvement and qualitative research methods

The blurring of boundaries between public involvement and qualitative research is documented as a methodological issue [ 41], but is not covered in any publications on ethics we are aware of. The ethical issue we have observed: " Can I record and transcribe the data from my focus group with patients" ( Researcher) [ the researcher was referring to a public consultation meeting].

Distinguishing between qualitative research methods and public involvement activities is often necessary at the research design stage. The use of terminology here is, we believe, important. Consultation or discussion groups are often referred to using qualitative research terms such as 'focus groups' and the information collected sometimes referred to as 'data'. However, those involved at the research design stage are not research participants and so in our view it is not helpful to refer to these activities using such accepted research terminology. This ambiguity may be related to researchers being unclear whether REC approval is required to involve the public at the research design ethical stage (highlighted earlier). If data is collected and published this would necessitate REC approval since it is research.

Some researchers advocate the explicit and deliberate combining of public involvement activities with qualitative research methods [ 20]. As highlighted earlier, we feel that this is misguided and can lead to considerable confusion and so is not generally appropriate. Although there is no reason why those who are involved in a study cannot also participate in some aspect of it the difference between the roles and what is expected need to be made explicit. Researchers should also carefully consider whether this might present those involved with any potential conflicts of interest.

Participatory research is a valuable research method that starts with public involvement and ends with the public becoming co-researchers collecting, analysing and interpreting the data. However, there will, or at least should be, other public involvement throughout a participatory research project. There cannot be participatory research without involvement but it just adds to the widespread confusion to deliberately confuse or even combine involvement (which is a way of working between researcher and the public throughout a study from first concepts through to implementation of the findings) with a specific method for data collection and analysis.

The national network of RDSs can advise on the use of qualitative research methods and consistent and appropriate terminology and practice for involving the public in the research design stage.

Working sensitively

The axiom 'do no harm' is one of the fundamental principles of ethics [ 28], and is also related to the notion of respect [ 34]. The ethical issue we have observed: " I need to find two people who self- harm to sit on my public involvement group to help me plan the public involvement bits of my study". ( Researcher).

Being conscious of confidentiality

Research confidentiality and anonymity are well-established ethical principles [ 28, 34, 35] concerned with researchers needing to be mindful of an individual's privacy. The ethical issue we have observed failed to take account of confidentiality: " The study is on X, [ removed the name of the sexually transmitted disease for confidentiality reasons] and Y [ researcher uses a real patient' s name] has offered to be involved as the patient" ( Researcher).

Respecting the confidentiality of personal issues disclosed during research design stage consultation groups requires fostering a confidential environment. Permissions and confidentiality challenges may also need addressing if the public involvement consultations are audio recorded and stored. In addition, if the public are involved in undertaking protocol reviews prior to submission for funding this necessitates adherence to a confidentiality agreement in the same way as for any other reviewers.

Valuing, acknowledging and rewarding public involvement

Researchers openly showing gratitude towards patients and the public in the research design process is not grounded in ethical principles but we believe forms part of the principles of respect [ 28, 34, 35] and integrity [ 34, 35] that will allow public contributors to contribute without undue personal burden, for example not being out of pocket because of their involvement. The ethical issue we have observed: " It' s too expensive to involve people [ at the research design stage]. I am not going to do it and anyway I don' t have the time". ( Researcher).

Researchers should be encouraged to highlight how involvement at the research design stage has been incorporated into their study. Valuing people as individuals with expertise to contribute [ 5] will lead to meaningful involvement and reduce the likelihood of them feeling disempowered and marginalised [ 44]. There can be financial burdens for those involved at the research design stage [ 45] and so it is important to also acknowledge involvement through reward and recognition. Out of pocket expenses should always be offered. Funding for research design stage public involvement is offered by most RDSs [ 46]. Alerting researchers that such funds are available for public involvement would be beneficial. However, some people may not accept payment, preferring other rewards (e.g. training opportunities). This is similar to the respect value in the INVOLVE's Values and Principles Framework [ 2], but again we recommend that it is stressed and applied at an earlier stage. Individual feedback to those who have been involved as well as communicating about the progress of the funding application are also important ways to value them [ 5].

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A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards - Research Involvement and Engagement

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Plain English summary Researchers who conduct studies in health and social care are encouraged to involve the public as early as possible in the process of designing their studies. Before their studies are allowed to start researchers must seek approval from a Research Ethics Committee, which will assess whether the study is going to be safe and ethical for patients or healthy volunteers to take part in.

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Ethical research: 'a state of being, not a state of doing'? (Co-production Collective blog 2022) 

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Ethical research: 'a state of being, not a state of doing'? (Co-production Collective blog 2022) 

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August 30, 2022
Lynn shares a personal, reflective account about developing guidance to help researchers and those seeking ethical approval for university linked work.
Why are we doing this work?

We started a project recently to try and provide guidance to help researchers and those seeking ethical approval for university linked work to get more clarity on ethics and ethical behaviour and, when needed, move beyond "getting" research ethics approval towards behaving and thinking ethically in co-production, involvement and engagement. The work is ongoing, this blog is a personal, reflective account from me ( Lynn Laidlaw) - I'm part of the project team working on this. The also team includes Helen (Craig), Jade (Davies) and Emeline (Han).

There is an often-used phrase that describes co production as a 'state of being, not a state of doing'. This came to mind when I thought about what to write in this blog. Should working in an ethical way be 'a state of being' when applied to co-production, involvement and engagement in research? Is the concentration currently only on the doing, the process of getting ethical approval? In attempting to answer these questions it's perhaps useful to define, what are research ethics?

The Health Research Authority (HRA), who run the ethics approval service for the NHS, state that:

"Research Ethics Committees protect the rights, safety, dignity and wellbeing of research participants and to facilitate and promote ethical research that is of potential benefit to participants, science and society."

Internationally the Declaration of Helsinki, a set of ethical principles regarding human participation in health research, was developed in 1964, after atrocities were found to have been committed by medical researchers who used participants drawn from Nazi concentration camps against their will. It has been updated multiple times since then and has served as the standard, internationally, in medical research ethics. Countries across the world have utilised it in their laws that govern medical research.

Why are we doing this work?

This ethics project was born out of the fact that many researchers and professional services staff across UCL have been seeking clarity on the ethical dimensions of their work with people outside of academia, whether that is via co-production, involvement or engagement work. Anecdotally, there are many within UCL who have struggled to know if their public engagement or patient public involvement projects are ethically appropriate and operating with integrity, with or without formal ethics applications. There have also been cases where staff and partners have been frustrated to go through lengthy ethical processes, where other projects that appear similar have not had to because they are seen as public engagement or patient public involvement at UCL and thus do not require ethical approval. Adding to the challenge is that unlike the HRA guidance for NHS linked work, there is no nationally agreed guidance for University Research Ethics Committees (URECs). Every university will have a UREC, they manage applications for all types of research project including co-production, or involvement and engagement work. In large organisations such as UCL there are multiple URECs' who may take a different view on what requires research ethics approval. Helen, Jade, Emmeline and I have been having conversations with researchers, co-producers, patient public involvement leads, public contributors, UREC members and other people who work in research about research ethics and co-production/patient public involvement/public engagement. We hope to write up case studies and provide guidance informed by these conversations, although, what form that will take is still under discussion!

Are research ethics a 'state of being', as well as doing?

From a personal perspective I have been reflecting on my question, 'are research ethics a state of being, as well as doing?' It's been fascinating talking to people about this issue and I am so grateful to those who have willingly given their time and insight to assist us. There are a few issues that have been highlighted multiple times, the conflation of co-production or patient public involvement with participation in research is one of them - as a co-producer and public contributor to research I don't feel I need to be "protected". Are researchers taught how to fill out UREC application forms at the expense of conversations and discussion about what are research ethics and how do we behave ethically when co-producing with people? Do co-producers and public contributors have a role in the UREC application process? At the moment I would say that UREC applications are mainly done to us, not with us. Are researchers applying to URECs in order to "get" ethics just in case a research journal asks them when they publish their research? When we approach the research ethics process as a "nice to have" or on a "just in case" basis are we really being mindful about ethics or seeing it as a yet another box to tick, or obstacle to be overcome in the research process?

As a society we are rightly increasingly concerned with equality, inclusivity and diversity and how these issues affect research. Does the research ethics process pay attention to these issues at the moment, and should it? Is research that isn't inclusive and diverse inherently unethical? There have been issues raised around involving "vulnerable" groups in co-production and patient public involvement - how do we guard against this becoming paternalistic while ensuring the rights of people are protected? How does the research ethics process reflect current societal values, and should it?

What is emerging from this project work?

What has been apparent from the conversations we have had is that all the people who are part of the research process value advice, guidance and a place to go to discuss these issues about co-production in research and patient public involvement, even if research ethics approval isn't required for patient public involvement or engagement work. The big question for me is, are these issues best discussed through the current UREC set up or do we need another forum for these, which involve everyone in the research process, including co-producers and public contributors to research? I hope that our project will answer some of these questions and beyond that start a wider dialogue about ethical issues in research which don't just relate to research participation, I understand that this is a big ask.

Thank yous and further reading

I want to thank Co-Production Collective for the opportunity to be involved in the project, Helen, Jade and Emeline have been wonderful to work with and our differing perspectives have enriched the project, as well as causing me to reflect on my biases. Also, Jim Elliot, the Public Involvement lead at the HRA, who has been so generous in sharing his in-depth knowledge of research ethics with me. His recent tweet thread about research ethics is a must read to help understand the issues, also a great thread from Sarah Knowles with links to academic papers discussing wider ethical issues.

The work is funded by Co-Production Collective at UCL working in partnership with UCL's Public Engagement team, part of UCL Engagement. If you would like to chat further about this subject, please feel free to contact us via email at coproduction@ucl.ac.uk.

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Ethical research: 'a state of being, not a state of doing'?

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August 30, 2022 Lynn shares a personal, reflective account about developing guidance to help researchers and those seeking ethical approval for university linked work. We started a project recently to try and provide guidance to help researchers and those seeking ethical approval for university linked work to get more clarity on ethics and ethical behaviour and, when needed, move beyond "getting" research ethics approval towards behaving and thinking ethically in co-production, involvement and engagement.