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A Rough Guide to Public Involvement - Why? Reasons to involve

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A Rough Guide to Public Involvement - Why? Reasons to involve

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Flow Chart for Enhancing Language Awareness in Research

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Flow Chart for Enhancing Language Awareness in Research

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Handy checklist to take you through from start to finish 

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Handy checklist to take you through from start to finish 

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Useful checklist that takes you from requesting the Public involvement team’s support through to the involvement activity and the feedback beyond.

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Checklist for involvement v1.0 12.07.2022

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Funding research development/Pre grant capture

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Funding research development/Pre grant capture

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Health and Care Research Wales Fellowships and PhDs

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Health and Care Research Wales Fellowships and PhDs

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New payment guidance for enabling payment for public involvement in Health and Care Research:

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New payment guidance for enabling payment for public involvement in Health and Care Research:

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A guide for organisations on determining the most appropriate payment approach

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1 hour training aimed at members of public new to involvement

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1 hour UK Public involvement standards  training

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1 hour UK Public involvement standards  training

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Narrated PowerPoint for anyone wanting to learn more about the UK standard for public involvement and how to apply them

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Other available public involvement training

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Other available public involvement training

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Public Involvement Impact Assessment Framework (PiiAF)

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Public Involvement Impact Assessment Framework (PiiAF)

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GRIPP2 reporting checklists (short form (SF) and long form (LF)

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GRIPP2 reporting checklists (short form (SF) and long form (LF)

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This template is designed to help you develop terms of reference for a group such as a public involvement advisory groups or research panels

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This template can be adapted and populated to meet the needs of your organisation

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Sail Consumer Panel Volunteer Role Description

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Rough Guide to Public Involvement - How? How to involve people

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Rough Guide to Public Involvement - How? How to involve people

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Published: 16 June 2021

Version: 1

What the Trial Steering Committee / Study Steering Committee does

The role of the TSC/SSC is to provide overall independent supervision of a trial or study. "In particular, the TSC should concentrate on progress of the trial, adherence to the protocol, patient safety and the consideration of new information." (MRC, 1998, 23-24)

The role of public members

Public members are involved in all aspects of the work of the TSC they join. Public members join on equal footing with the clinical and academic members. They bring to the discussion their experience of a particular condition or service as a patient or a carer, or members of the public who are affected by the issues being researched.
Through their lived experience they may contribute by:

considering the perspective of a potential study participant assisting with recruitment and retention plans

providing a fresh 'critical friend' perspective on the feasibility (practicalities and acceptability) of study design and

offering advice on the planned PPI in the study including adherence to protocol and milestones.

The public member's perspective

As a public member they will have experience of a particular condition or service as a patient or a carer, or be a member of the public who is affected by the issues being researched.

A public member could consider the following questions.

1. Is the PPI originally planned being implemented?

2. Could PPI help in an area the study experiences challenges (e.g. recruitment, acceptability of the intervention, inclusion of all appropriate people and groups, promotion of the study)?

3. Would people be interested in being recruited to this study?

4. Would they want to stay involved for the whole study duration?

5. If not, why not and how could this be addressed?

6. Are the criteria for including/excluding people as participants fair and appropriate?

7. Are there any aspects of the study design which don't seem workable (practical and acceptable)?

8. Do you think the timescale is achievable?

9. Are you happy with the plans for how the results will be shared with all interested parties (for example, study participants, service users, patients, carers, service providers, clinicians, commissioners)?

Expectations of public members are the same as other members

To prepare for the meetings by looking at all the papers circulated from the perspective of a person who has experience of a particular condition or service as a patient or a carer, or a member of the public who is affected by the issues being researched.

To attend the TSC/SSC meetings whether held face-to-face or by telephone.

To liaise with the Chair regarding administrative matters between meetings.

To feedback on documents occasionally between meetings.

To contribute to discussions and decision-making that take place during meetings, based on experience and knowledge and on consideration of the papers provided.

To maintain the confidentiality of agenda papers, discussion and decisions made.

Terms and conditions

Public members should be provided with a description of the terms and conditions of the role at the outset to ensure the public member knows what to expect. These should include:

Duration of role

How much preparatory work is expected

Time requirements including frequency and length of meetings and expected work in-between

Payments including rates and processes for receiving payment

Expenses for public and private transport, food, drinks and if necessary accommodation

An access and support form should be included in appendix (see example here in appendix 2).

Declarations of interests to guard against potential conflicts of interest

Person specification

These are desirable not essential criteria. Ideally, public members of TSC/SSCs should be independent and therefore not involved other aspects of the study. They must not sit on another committee or group related to the same study.
Experience

Experience of a particular condition or service as a patient or a carer relevant to the topic of the study, or a member of the public who is affected by the issues being researched

Experience of participating in formal meetings

Experience of reading and reviewing written documents

Experience of working as part of a team

Experience of public involvement in research

Knowledge

An understanding of the importance of and need for health research

An understanding of the research process and public involvement

Skills

Confidence and ability to contribute relevant and succinct information to group discussion.

Ability to refer to personal experience and reflect on wider lay perspectives appropriately in discussion.

Ability to use e-mail, phone for teleconferencing and the internet.

Personal Characteristics

Interest in improving health care services and provision.

Willing to learn the skills of the role and to develop.

Ability to travel to venue of meetings.

Able to maintain the confidentiality of all study materials.

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Appendix 1 - Public TSC/SSC Member Role Description

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Published: 16 June 2021 Version: 1 The role of the TSC/SSC is to provide overall independent supervision of a trial or study. "In particular, the TSC should concentrate on progress of the trial, adherence to the protocol, patient safety and the consideration of new information."

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Published: 11 June 2019

Version: Version 1.0 - June 2019

The role description and person specification provided below apply to public members of committees at the NIHR.

Role description

NIHR committees usually have approximately 20 members, which include public member(s). These committees assess research proposals which are applying for funding from the Government and research briefs that describe a potential area of research. Successful candidates joining as public members have an equal footing with the clinical and academic members, and they have the key task of bringing a patient and public perspective to the discussions.

The key responsibilities of public members of an NIHR committee are to:

Prepare for committee meetings by reading and assessing meeting papers that are routinely lengthy and complex.

Regularly attend and participate in committee meetings (up to four times a year for one or two days).

Contribute to the discussions and decision-making that take place during meetings from a general point of view as a member of the public and/or someone who has knowledge and experience as a patient, carer or service user.

Present written and/or verbal assessments of applications, if required.

Adhere to guidance provided to committee members, including policy on confidentiality and conflicts of interest.

Liaise promptly with programme staff regarding the work of the committee and any administrative matters.

Be willing to undertake OR attend appropriate training, development and support activities offered free by the NIHR.

Examples of some of the questions that public members might address are:

Is this research important or relevant to patients, carers or service users? Why is that?

Could the results of the research make a difference to patients, carers or service users?

Did the researchers seek the advice of other patients, carers or service users when they planned the research?

Does the plain English summary in the application form give a clear and simple explanation of the research?

Will patients, carers or members of the public be willing to take part in the project? Or will it inconvenience them so much that they are unlikely to agree to take part?

Will patients, carers or members of the public be involved if the research is funded? If so, is the involvement proposed appropriate?

Is there a budget for patient, public or carer involvement? If so, is it sufficient?

Will patients, public or carers be involved in sharing the research findings?

There is a free online interactive course designed for new and experienced public committee members as well as public reviewers. The course includes an overview of the NIHR, an introduction to PPI, public reviewing roles with the NIHR and skills such as providing constructive feedback and approaching complex documents.
You can also watch a video about public members sharing their experiences and insights on the role of a public committee member, including some useful top tips.
Person specification

If you apply to become a public committee member, your application will be assessed against the essential criteria:

Experience and knowledge

Experience as an active member of a multidisciplinary committee or working group, for example, Research Ethics Committee, Healthwatch committee, housing association committee or a committee member for a local charity or club. (Application form)

Experience of assessing complex written documents, for example, research applications. (Application form/interview)

Knowledge and experience of patient and public involvement in health and social care services and/or research. (Application form/interview)

Skills and abilities

Ability to reflect a broader range of patient, service user, carer and public perspectives in addition to own personal experience. (Application form/interview)

Ability to take part in constructive debate and present views succinctly. (Application form/interview)

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NIHR Public Committee Member Role Description and Person Specification

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Published: 11 June 2019 Version: Version 1.0 - June 2019 The role description and person specification provided below apply to public members of committees at the NIHR. NIHR committees usually have approximately 20 members, which include public member(s). These committees assess research proposals which are applying for funding from the Government and research briefs that describe a potential area of research.

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Public Involvement in Research Impact Toolkit (PIRIT)

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PIRIT is a set of pragmatic tools which aim to support researchers working with public contributors.

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Digital/Hybrid checklist for running interactive PI meetings and workshops

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Digital/Hybrid checklist for running interactive PI meetings and workshops

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Digital and Hybrid gathering checklist v1.0 20 Jan 2023

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Involvement of the public is not employment and usually it is a positive experience for all concerned. Sometimes things go wrong, this procedure should help and is based on advice from the Wales Centre for Voluntary Action (WCVA)

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New public involvement checklist. HRA have launched a new public involvement checklist to support researchers submitting studies for research ethics review. 

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New public involvement checklist. HRA have launched a new public involvement checklist to support researchers submitting studies for research ethics review. 

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Helping to ensure public involvement informs ethical review: checklist for applicants

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The HRA website has guidance about public involvement for applicants. The fourth of HRA's Best Practice Principles for public involvement in research advises applicants to 'Describe how it helps'.