# data[].attributes.headline
Why Politics Should Be in Every Medical Student's Curriculum

# data[].attributes.subject
Why Politics Should Be in Every Medical Student's Curriculum

# data[].attributes.attachment_link.description
Verifying you are human. This may take a few seconds.

# data[].attributes.attachment_link.description
A collection of resources on anti-racism, intended to guide you through whatever stage of the journey you’re at.

# data[].attributes.headline
Gender affirmative lens and trans rights

# data[].attributes.subject
Gender affirmative lens and trans rights

# data[].attributes.attachment_link.readable_text
Gender affirmation is an umbrella term for the range of actions and possibilities involved in living, surviving, and thriving as our authentic gendered selves.

What gender affirmation looks like for every individual trans person is unique and based on what is personally affirming, what feels safe to do, and what is accessible and available.

The 'Gender Affirming' model of healthcare is about recognising and acknowledging that trans people tell the truth about who we are. Unfortunately, this approach to care is sometimes wilfully misconstrued as meaning an immediate race to hormones and surgery for all trans people, particularly young people. The reality is very different though with many trans people reporting significant barriers to accessing this medically necessary healthcare.

For trans young people, gender affirmation means being able to socially affirm their gender (with name, pronouns and expression), medical intervention for pre-pubertal trans young people does not occur in Australia, ever.

How do trans people affirm their gender?

There's a common myth that gender affirmation (or transition) is a linear experience from A to B, when in reality we affirm our genders in many different ways. There is no right or wrong way to affirm your gender.

TransHub also uses the term gender affirmation instead of transition or gender transition, to reflect the breadth of actions and possibilities that can be involved in living and thriving as our gendered selves.

While transition is used both linearly and non-linearly by trans people, our use of affirmation is intentional - many people, trans and cis, observe the trans experience through a lens of medical intervention. For more information about this, go to our language page.

On TransHub, we've divided this up into the sections Social, Medical and Legal affirmation.

Social affirmation describes how we introduce our authentic selves to the world around us, whether the world notices or not. This might mean forms of affirmation you can do without involving anyone else, and which you can change your mind about later, including: starting to use your chosen name and pronouns, coming out, wearing new clothing, or modifying the shape of your body, cutting or shaving your hair, playing around with how you use your voice, and more. Social affirmation also includes playing sport, going to work, and participating in life as our true selves. This can be really liberating and also scary for trans people, and we need allies around us, particularly when we start coming out

Medical affirmation describes forms of affirmation we might do with the help of doctors or health professionals, including: taking some form of hormones such as estrogen, testosterone, or progesterone, or puberty blockers or having affirmative surgeries, such as chest surgery, genital surgery, facial surgeries, or more.

Legal affirmation describes affirming your gender when working with legal and legislative systems, including: updating your name or gender marker at work, school, or on forms of ID, your rights in various settings, and being affirmed while working within systems like the police, prison, and immigration.

Trans people also affirm our gender in many other ways throughout our lives, such as when interacting with health services, people we don't know out in the world, or just for ourselves.

Do only trans people affirm their gender?

While we describe many things as ways that trans people can affirm their gender, for many people they are simply being their gender.

While 'gender affirmation' as a term is usually only used by trans and gender diverse people, cisgender people are constantly doing things that make them feel better, comfortable, or supported in their gender too.

This might be buying clothes or makeup that make them feel good, going to the gym, getting plastic surgery or beauty treatments, accessorising living and work spaces, and more. These aren't traditionally seen as a form of 'gender affirmation' because unlike trans people, cis people aren't required to affirm their gender for it to be seen as real or valid.

Access to free and timely health care that respects self-determination, autonomy, and the medical necessity of gender affirmation for those who seek it, is a life saving and affirming right for all trans people.

# data[].attributes.attachment_link.description
Gender affirmation is an umbrella term for the range of actions and possibilities involved in living, surviving, and thriving as our authentic gendered selves. What gender affirmation looks like for every individual trans person is unique and based on what is personally affirming, what feels safe to do, and what is accessible and available.

# data[].attributes.headline
Health disparities and health inequalities

# data[].attributes.subject
Health disparities and health inequalities

# data[].attributes.attachment_link.authors[].name
Office for Health Improvement and Disparities

# data[].attributes.attachment_link.title
Health disparities and health inequalities: applying All Our Health

# data[].attributes.attachment_link.description
Please note that the Public Health England team leading this policy transitioned into the Office for Health Improvement and Disparities on 1 October 2021.

# data[].attributes.attachment_link.title
The four foundations of belonging at university | Wonkhe

# data[].attributes.attachment_link.description
The concept of belonging is notoriously hard to define. Despite 'belonging' being the buzzword in universities - and known to contribute to student success -there has been relatively little insight at a sector-wide level. Covid-19 dialled up the barriers to creating student belonging, and as the country emerged from the lockdown restrictions, it became clear that re-engaging students would be a significant challenge.

# data[].attributes.attachment_link.description
Scott Podolsky and David Jones discuss some of the many physicians who have been called to activism over the years—and how this has changed medicine and society Even when physicians focus their work on the care of individual patients, they often see patterns behind the disease and suffering that prompt people to seek medical care. Diseases in humans reflect social, economic, political, and environmental conditions. Weary of managing this status quo, some physicians work to change the world around them.1 Still others work to change the healthcare system to make it more inclusive of physicians from diverse backgrounds or more accessible to previously marginalised communities around the world. Their efforts have taken many forms, such as pioneering new types of care, conducting research to guide policy, or public advocacy and government service. Medical activists work at the interface of medicine and society, often recognising the two as inextricable, in their efforts to bring about change. It’s not possible to know which physician did this first, and any effort to identify a few exemplars will inevitably neglect others worthy of recognition. Many accounts of physician activism begin with Rudolf Virchow, who certainly earned his fame as a pioneer.23 In February 1848 Virchow, a recent medical graduate from a Berlin medical school, was sent to accompany a Prussian official on an investigation of typhus in Upper Silesia (now Poland). He focused on government and church policies that had left the population mired in squalid poverty (profound racism, which he himself exhibited, presumably didn’t help). He demanded that the Prussian government grant Silesia “full and unrestricted democracy,” along with investments in roads, agriculture, and workers’ rights. While Virchow didn’t remain in Silesia to implement such reforms, he did spend much of his life advocating in Germany for health and political …

# data[].attributes.attachment_link.title
What Are Health Inequalities? | The King’s Fund

# data[].attributes.attachment_link.description
This explainer provides an overview of how health inequalities are experienced in England’s population.

# data[].attributes.headline
What are the social determinants of health?

# data[].attributes.subject
What are the social determinants of health?

# data[].attributes.attachment_link.readable_text
The social determinants of health (SDH) are the non-medical factors that influence health outcomes. They are the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life. These forces and systems include economic policies and systems, development agendas, social norms, social policies and political systems.

The SDH have an important influence on health inequities - the unfair and avoidable differences in health status seen within and between countries. In countries at all levels of income, health and illness follow a social gradient: the lower the socioeconomic position, the worse the health.

The following list provides examples of the social determinants of health, which can influence health equity in positive and negative ways:

Income and social protection

Education

Unemployment and job insecurity

Working life conditions

Food insecurity

Housing, basic amenities and the environment

Early childhood development

Social inclusion and non-discrimination

Structural conflict

Access to affordable health services of decent quality.

Research shows that the social determinants can be more important than health care or lifestyle choices in influencing health. For example, numerous studies suggest that SDH account for between 30-55% of health outcomes. In addition, estimates show that the contribution of sectors outside health to population health outcomes exceeds the contribution from the health sector.

Addressing SDH appropriately is fundamental for improving health and reducing longstanding inequities in health, which requires action by all sectors and civil society.

# data[].attributes.attachment_link.description
WHO's work on social determinants of health

# data[].attributes.attachment_link.authors[].name
Institute for Healthcare Improvement - IHI

# data[].attributes.attachment_link.title
What Is Bias, and What Can Medical Professionals Do to Address It?

# data[].attributes.attachment_link.title
Understanding unconscious bias | The Royal Society

# data[].attributes.attachment_link.authors[].name
Institute for Healthcare Improvement - IHI

# data[].attributes.attachment_link.title
How Does Implicit Bias Affect Health Care?

# data[].attributes.attachment_link.title
What is Transphobia? - Gender Minorities Aotearoa

# data[].attributes.attachment_link.description
Transphobia consists of three main parts - Stereotypes, Prejudice, and Discrimination. Any one of these parts on their own can be transphobia. Learn more.

# data[].attributes.attachment_link.description
Listen in to Professor Habib Naqvi, Chief Executive of the NHS Race and Health Observatory and Dr Rohan Mehra, Royal College of Physicians clinical education fellow, (Infectious diseases/microbiology SPR). Here they explore a raft of health inequalities that exist due to racial bias and discrimination, and address the action needed to prevent and combat the challenges faced.

# data[].attributes.attachment_link.title
Eliminating Explicit and Implicit Biases in Health Care

# data[].attributes.headline
Characteristics associated with Physician Bias

# data[].attributes.subject
Characteristics associated with Physician Bias

# data[].attributes.attachment_link.title
Characteristics Associated With Physician Bias in Contraceptive Recommendations

# data[].attributes.headline
Ethnicity and workload affect GP bias and discrimination

# data[].attributes.subject
Ethnicity and workload affect GP bias and discrimination

# data[].attributes.attachment_link.title
Individual  interpersonal  and organisational factors associated with discrimination in medical decisions affecting people with a migration background (1)

# data[].attributes.headline
The impact of Racism on Clinical Decision Making

# data[].attributes.subject
The impact of Racism on Clinical Decision Making

# data[].attributes.attachment_link.title
THE IMPACT OF RACISM ON clinician cognition and decision-making

# data[].attributes.attachment_link.title
Twelve tips of teaching avoidance of diagnostic errors (1)

# data[].attributes.headline
Inclusivity in health professions education

# data[].attributes.subject
Inclusivity in health professions education

# data[].attributes.attachment_link.title
8 pages_INCLUSIVITY_The Clinical Teacher_inclusivity in health education

# data[].attributes.headline
What actually is 'anti-racist' pedagogy?

# data[].attributes.subject
What actually is 'anti-racist' pedagogy?

# data[].attributes.attachment_link.title
You're Doing It Wrong: The evolution of cultural competence | Raquel Martin | TEDxRutgersCamden

# data[].attributes.attachment_link.title
1 page_developing structural humility in medicine

# data[].attributes.attachment_link.title
11 pages_Moving from cultural competency to structural humility

# data[].attributes.headline
Toolkit - Culturally Sensitive Curriculum Scale

# data[].attributes.subject
Toolkit - Culturally Sensitive Curriculum Scale

# data[].attributes.attachment_link.title
Structural competency Theorizing a new medical engagement with stigma and inequality

# data[].attributes.attachment_link.title
Patient- and Family-Centred Hospital Care - The Need for Structural Humility

# data[].attributes.headline
Structural Humility and Sports and Exercise Medicine

# data[].attributes.subject
Structural Humility and Sports and Exercise Medicine

# data[].attributes.headline
Do's and Don't's of decolonising the curriculum

# data[].attributes.subject
Do's and Don't's of decolonising the curriculum

# data[].attributes.attachment_link.readable_text
Harshad Keval
Decolonising the University and / or decolonising the curriculum (DTU/C) has come to occupy a contested space in recent debates. The need to change not only curricula but the University system is borne of a long standing problem of institutional discrimination. There is no shortage of of racial and ethnic inequality within higher education. As a number of student led movements around the globe have actively sought acknowledgement of the West's collusion in the colonial power relations that then shape education (e.g. Rhodes Must Fall Oxford and South Africa, "Why is my curriculum White" at UCL and , there can often be confusion about what decolonizing might mean. Meera Sabaratnam (2017) sums up some possible interpretations of what decolonizing curricula might mean for the uninitiated: Exploring shared assumptions about how the world "is" (in relation to a global colonial history), and how and why it came to be this way; the "relationship between the identity of the writer, what they write and how they write about it" and what a more diverse student and staff body might mean, as institutions reflect wider societies they are located and embedded within.

Rather than rule out knowledge that has developed in Western Europe and North America, it seeks to situate it as produced in relation to the range of knowledges outside of European thinkers, and as a result of colonial and imperial and power (Bhambra ; Grosfuogel ). The point of DTU/C is to co-produce an intellectual and academic endeavour that embodies inclusivity and re-positions who and what gets to occupy the centre and the margins of ideas and society, and re-balance power. There have been backlashes to the DTU/C momentum, with . Suffice to say what is at stake here is the position of knowledge itself - who and what gets marked out as 'identity' politics, and who and what simply recedes into the background of normalised systems of whiteness and mainstream knowledge.

This piece is partly a lighter hearted look at this important discussion, but with a serious intention: to explore the structural and systemic logics that create and maintain these positions in the first place, which are then consciously or unintentionally used. Rather than reflecting individuals or individual statements, the steps below reflect how ways of thinking and responding can become embedded and normalised into positions we might at some point in institutional life find ourselves taking, often without realising the implications.

Step 1: Don't use the terms 'diversity', 'inclusivity' and 'attainment' instead of talking about structural racism, neo-colonial narratives, and institutionally embedded bias.
These terms and initiatives have a place in wider, institutional frameworks but when used as substitutes for structural racism and gender discrimination, they remain impotent, relegated to outer reaches of higher education business. The inequalities has been in for some time now, and the racial barriers to staff and students are established, but the consistent manoeuvre around racism reflects of the concept and practice. The diversity agenda and the way in which institutional processes gloss over, ignore, and simplify important intersectional inequalities has been written about elsewhere. So there is a need to name what needs to be done, which requires a willingness to accept one's complicity in what has been going on. As Probyn-Ramsey quotes: "if we start with complicity, we recognize our ''proximity to the problems we are addressing'' (quoted in Ahmed 2012: 6).
Do ask: What power structures that I am involved in, more often than not roped into, where decolonising is actively ignored, can I help to dismantle? By not talking about racism, who is left out and what becomes normalised?

Step 2: Don't say: "It's really not my area...I don't know anything about this..."
Perhaps. But this is about more than something being outside of one's knowledge boundaries. It is about the nature of knowledge itself, and what we, as academics come to accept as normalised, central, mainstream, and therefore ' worth knowing'. For example, every social science academic position requires a high level of knowledge at broad and deep levels, spanning not only their own specific expertise but also in other related fields and disciplines (these are essential criteria for most academic positions). Why then is the vast range of social science, research, philosophy and theory that currently exist outside of these criteria not part of what a social scientist should know or be interested in? Social science training, learning and teaching all treat postcolonial and decolonial knowledge as 'other'. To adopt a position of not-knowing, necessarily requires an unspoken, sub/unconscious adoption of knowing something, and placing that knowledge as foremost in a hierarchy of knowledges.
Do ask: What have I assumed about what is worth knowing?

Step 3: Don't ask: "Can't the person of colour / specific gender do it? I haven't got time."
If it takes prolonged periods of intellectual and embodied labour for any in-depth knowledge, why assume that the DTU/C project should fall on the shoulders of people who will be double-burdened with the task of knowing 'mainstream' knowledge and what is required for DTU/C? The question above now looks like: "It will only take a few minutes of my time to know a substantial amount of the knowledge base outside of what is 'proper and real' University knowledge. Please provide me with a readily digestible summary." The comparison is worth thinking about and reflecting on for both speakers and hearers of this question. This has labour implications for institutions and staff. To assume that the vast and diverse range of thought, writing and activism of decoloniality can and should be summarised into easily digestible and therefore less important tasks is reflective of a wider logic of colonial thinking and knowledge.
Do say: "I will go and do some reading and thinking - can I talk with you and colleagues more about this?

Step 4: Don't ask the question: "but I haven't colonized anything...why do I need to do this?"Contrasting decolonising against 'business as normal' operations presents decolonizing as a process at the margins of society and social scientific enquiry; as something that comes from the outside, and that can and should affect only some subject positions; occupying a remedial, corrective role. Most of us accept that our lives are constituted by networks of interdependent social and cultural fabric, with individual and collective actions creating and sustaining our lives. But when it comes to DTU/C, this thinking falls by the wayside. Why? Because this position reinforces a separation in thinking, rather than through connected thinking. We all have a responsibility as members of connected historical groups, to think about who we are, how we have come to be, and how these positions operate through networks of historical and contemporary power relations. In a word, transcend 'methodological whiteness'.
Do ask: When I look around me, where do networks of power coalesce and what role does colour, race, language, gender, class, disability, etc. play in this?

Step 5: Don't ask: "If decolonizing involves bringing in all these 'other' ideas and writers, what about all the 'classics'?"
There is a plethora of work (see https://globalsocialtheory.org) that dismantles the misconception that White western 'canons' of theory are civilizational products of cultural and intellectual superiority. The 'classics' hold this position for a specific reason. A canonical text cannot be thus without its connection to the imperial and colonial economic enterprise on which it was based. To believe that knowledge production in the West happens in an epistemological vacuum outside of the West's collusion with racial, gendered and economic genocide since the 16th century is a dangerous fiction to retain. Sociology as a discipline, for example, was birthed through its comparison with anthropology, which explicitly dealt with the practices of the (colonial) 'other', hence its focus on 'modern' societies (Bhambra, ; ). 'Modernity' as the discipline's core focus is regarded as a thing in itself - unique and untangled, problematically seen without connection to its own complicity in racialized, gendered inequality and brutality.
Do ask: What do I understand to be a 'classic', or a 'canon' and why?

Step 6: Don't make the statement: "There are bigger problems in the University system to deal with..."
Indeed there may well be, but again what is being said here is not as important as what is being done, and what is being ignored. Research indicates that even with institutional and national policy frameworks, staff and students alike are still experiencing huge barriers, obstacles and discrimination. As Universities sign up to the recent Advance HE Charter mark, the obvious step-in-the-right-direction signals notwithstanding, neo-liberal, corporate and bureaucratic machineries (Holmwood and Bhambra, 2012) assimilate this into their modus operandi. DTU/C is not a single project of liberation for a minority group. As a varied, multi-disciplinary, and social justice based campaign, it seeks to enhance and sustain the intellectual, practical academic rigour that education systems purportedly perform today. Many of these battles take place in the increasingly precarious University as sites of social and community action. There may well be bigger problems within the University system, but only if we think of these problems are disconnected and separate from the neo-liberalisation of society itself.
Do think about: What conditions have brought about my framing of these problems as separate? In what ways does this connect to the other problems in the institution?
is a senior Lecturer in Sociology at Canterbury Christ Church University and teaches and writes on Race, Postcolonial and Decolonial Theory and Practice.
IMAGE CREDIT: Drawing from an 1879 edition of L'Astronomie, depicting Christopher Columbus predicting the lunar eclipse to the native Jamaicans.

# data[].attributes.attachment_link.title
Navigating the 'Decolonising' process: Avoiding pitfalls and some Do's and Don't's

# data[].attributes.attachment_link.description
Harshad Keval Decolonising the University and / or decolonising the curriculum (DTU/C) has come to occupy a contested space in recent debates. The need to change not only curricula but the Universi...

# data[].attributes.attachment_link.title
Belonging and Mattering in Higher Education

# data[].attributes.attachment_link.title
Inclusive teaching and anti-racist pedagogy

# data[].attributes.headline
What are the commercial determinants of health?

# data[].attributes.subject
What are the commercial determinants of health?

# data[].attributes.attachment_link.description
Commercial determinants of health are the conditions, actions and omissions by corporate actors that affect health. Commercial determinants arise in the context of the provision of goods or services for payment and include commercial activities, as well as the environment in which commerce takes pla…

# data[].attributes.headline
The social vs medical model of disability

# data[].attributes.subject
The social vs medical model of disability

# data[].attributes.attachment_link.title
The Social Model of Disability - by Toucan Diversity

# data[].attributes.attachment_link.title
Human rights and the practice of medicine - Public Health Reviews

# data[].attributes.attachment_link.description
There exists a profound disconnect and misunderstanding of the utility of human rights in the practice of medicine that demands urgent attention. The United Nations Special Rapporteur, Dainius Pūras, reflects on his career as a medical professional and why human rights in the day to day care of his patients became a powerful tool to strengthen his practice and ensure the dignity and well-being of those he served. This preface reflects on some of the troubling paradoxes encountered in the practice of medicine, identifying the disconnect between human rights and the provision of patient care as a fundamental struggle that urgently requires a framework for action, much like what is offered by the authors of this special edition. A historical reflection of the power relations between the medical profession and those it serves concludes with a message of hope and a galvanizing call for leadership from within the medical community to lead rights-based reform in patient care.

# data[].attributes.attachment_link.authors[].name
Centre for Leadership, College for Health, Wellbeing, and Life Sciences, Sheffield Hallam University, Sheffield, UK

# data[].attributes.attachment_link.title
Doctors who are activists remind and inspire us also to do the work

# data[].attributes.attachment_link.description
Launer highlights that many doctors have been called to activism over the decades, investing their knowledge and social capital in their advocacy work.1 Medical activism encompasses areas as diverse as sanitation, nuclear threat, health inequity, racism, and reproductive justice, among others.2 Doctor and aid worker Lynne Jones recently wrote about her journey to activism. …

# data[].attributes.attachment_link.description
Doctor activists are in the news. Sarah Benn, a former GP from Birmingham, has had her medical licence suspended for five months after being arrested for taking part in peaceful protests by Just Stop Oil.1 Medical members of the Extinction Rebellion movement have served jail sentences for taking part in peaceful protests about the climate emergency: they now face disciplinary hearings to determine whether they’ll be struck off.2 It’s tempting to think that medical activism is new, but it isn’t. There’s a distinguished history of doctors, some of them eminent, putting their medical careers and reputations at risk by making social action a priority.3 As it happens, two books I’ve …

# data[].attributes.headline
Maternal and Neonatal Health Outcomes for women from Black, Asian and ethnic minority backgrounds

# data[].attributes.subject
Maternal and Neonatal Health Outcomes for women from Black, Asian and ethnic minority backgrounds

# data[].attributes.attachment_link.readable_text
A landmark Learning and Action Network designed to address stark disparities in maternal, perinatal and neonatal health outcomes for women from Black, Asian and ethnic minority backgrounds will officially launch on January 24.

The NHS Race and Health Observatory, in partnership with the Institute for Healthcare Improvement and supported by the Health Foundation, have established an innovative 15-month, peer-to-peer Learning and Action Network to address the gaps seen in severe maternal morbidity, perinatal mortality and neonatal morbidity between women of different ethnic groups. Across England, nine NHS Trusts and Integrated Care Systems will participate.

Data consistently show alarmingly higher rates of maternal and baby deaths amongst Black and Asian women compared to their White counterparts. In the UK, Black British mothers are up to four times more likely than White mothers to die during pregnancy or within the first six weeks after childbirth. The risk of dying from pregnancy-related causes is three times higher for mothers of mixed ethnicity than for White mothers and twice as high for women of Asian ethnicity.

The programme will be supported by an advisory group made up of experts in midwifery, maternal and neonatal medicine, and nursing and will run until June 2025. Dame Ruth May, Chief Nursing Officer for England and Kate Brintworth, Chief Midwifery Officer for England are among healthcare leaders, nursing and maternal experts speaking at the launch event.

The Network, the first of its kind for the NHS, will combine Quality Improvement with explicit anti-racism principles to drive clinical transformation and aims to enable system-wide change. Over a series of action, learning and coaching sessions, participants will use Quality Improvement methods; review policies, processes and workforce metrics; share insights and case studies; and hear from mothers, parents and pregnant women and people.

Professor Habib Naqvi, chief executive, NHS Race and Health Observatory, said:

"We are delighted to be working with the Institute for Healthcare Improvement, the Health Foundation and a range of healthcare providers, on this collaborative learning and action-focused programme.

"It's clear that long-standing racial disparities in maternal and neonatal health outcomes require urgent action. The mission of the Observatory is not just to highlight the scale of disparities, but to also provide practical, evidence-based solutions to those challenges. That's why we'll be working alongside healthcare providers, from across the country, to make practical progress in addressing these inequalities in a sustained and meaningful way."

As part of the Learning and Action Network, each team will outline their objectives, key measures, and targets to reduce and manage risks. Priority areas are haemorrhage, preterm birth, post-partum depression and gestational diabetes. Tailored action plans will be developed with each team to explore measures to tackle these, with findings factoring an embedded equity lens.

Longer term, the programme will see the development of new equitable policy recommendations for maternity providers and build a repository of best practice for potential replication across the country.
Kate Brintworth, chief midwifery officer for England, said:
"One of our key ambitions in the NHS three-year delivery plan for maternity and neonatal services is to reduce inequalities for all in access, experience, and outcomes.

"This new network will help to accelerate local improvements in maternity and neonatal services, helping to ensure safer, more personalised and equitable maternity care for all women, babies and families."
Pedro Delgado, vice president, Institute for Healthcare Improvement, said: Dr Malte Gerhold, director of Innovation and Improvement at the Health Foundation, said:
" We continue to learn from our work globally that there is no quality without equity, and there is no equality without equity. Furthermore, inequities lead to harm and suffering. We value the partnership with the Observatory and the Health Foundation and look forward to working with NHS Trusts and Integrated Care Systems to measurably close race related equity gaps for and with mothers and babies using improvement methods, building on their existing efforts.

"The aspiration is to accelerate the pace of improvement, partner closely with mothers and families, foster collaboration across the system and use the intensive learning with these teams to inform approaches to scale up and spread impactful changes over time that will reduce harm, suffering, and improve outcomes".

The project was announced in September 2023 following an Expression of Interest issued by the Observatory inviting NHS provider and system sites to join by submitting applications.

"Successful quality improvement in health care relies not just on the use of robust methodologies, but on bringing together staff across boundaries, building relationships, and developing new solutions together, including with patients. And critical in this joint effort is making sure that it improves care for everyone, and particularly those receiving poorer outcomes, access or quality.

"We hope that through these new action and learning networks the RHO and IHI can demonstrate a way to achieve this, and help making equity a central component of all future improvement activity in the NHS."

Participating sites include:

1. Birmingham Women's and Children's Hospital NHS Foundation Trust / Birmingham and Solihull ICS

2. Bristol, North Somerset & South Gloucestershire ICS

3. Imperial College Healthcare NHS Trust / North-West London ICS

4. Lancashire Teaching Hospitals NHS Foundation Trust / Lancashire and South Cumbria ICS

5. St Mary's Hospital (Manchester University NHS Foundation Trust) / Greater Manchester ICS

6. North Central London ICS

7. North-East London ICS

8. Northern Care Alliance NHS Foundation Trust/ Greater Manchester ICS

9. University Hospitals of Leicester NHS Trust / Leicester, Leicestershire and Rutland ICS

# data[].attributes.attachment_link.title
New Learning Network Set to Improve Maternal and Neonatal Health Outcomes

# data[].attributes.attachment_link.description
A landmark Learning and Action Network designed to address stark disparities in maternal, perinatal and neonatal health outcomes for women from Black, Asian and ethnic minority backgrounds will officially launch on January 24.

# data[].attributes.headline
Facts and figures about racism and mental health

# data[].attributes.subject
Facts and figures about racism and mental health

# data[].attributes.headline
Taking racism out of clinical guidelines

# data[].attributes.subject
Taking racism out of clinical guidelines

# data[].attributes.attachment_link.authors[].name
1BMJ, London, UK2NHS Race and Health Observatory, London, UK

# data[].attributes.attachment_link.title
Taking racism out of clinical guidelines

# data[].attributes.attachment_link.description
Guidelines should be reviewed to identify inappropriate use of race and ethnicity Health systems continue to grapple with the deeply rooted consequences of systemic racism within healthcare. The immediacy of this challenge is evidenced in the recent Whitehead report,1 published in the UK, which highlights ethnic inequalities arising from the design and calibration of medical devices. Internationally, race and ethnicity remain common clinical discriminators for guiding decisions within medical guidelines. Alongside efforts to identify and tackle racial inequalities associated with medical devices, health systems globally need to urgently review the appropriateness of using ethnicity to guide treatment decisions and to critically re-examine the rationale for using race or ethnicity as a clinical tool. Race and ethnicity are constructs shaped by social and political factors with almost no biological basis. Historically, medicine has often attributed differences observed in ethnic minority populations to their biology and genetics, with limited or no scientific underpinning. The Human Genome Project has highlighted both substantial genetic variation between people of the same ethnic group and close similarity between people of different ethnic groups, making them a poor proxy for genetic difference.23 Using race or ethnicity as a marker for cultural differences can be equally unreliable and unhelpful. Clinical guidelines and risk scores …

# data[].attributes.headline
Heart attack gender gap is costing women's lives

# data[].attributes.subject
Heart attack gender gap is costing women's lives

# data[].attributes.attachment_link.readable_text
Abstract

The neurodiversity paradigm challenges pathologising accounts of neurodevelopmental differences, including autism, attention deficit disorder (ADHD), dyslexia, developmental language disorder (DLD) and others. From a neurodiversity perspective, these differences in the way people perceive, learn about and interact with the world are conceptualised as naturally occurring cognitive variation, akin to biodiversity in the natural environment, which may bring unique strengths and challenges for individuals. An implication of this approach is that interventions designed to create contexts in which neurodivergent people can thrive are needed, in addition to those that seek to ameliorate individual-level difficulties. In this conceptual review, we consider how higher education can offer a context in which cognitive diversity can be noticed, welcomed and accepted with warmth. In universities, neurodiversity is one dimension of difference within an increasingly diverse student population, which overlaps - but is not synonymous - with disability. We argue that improving experience and outcomes for neurodivergent students should be a priority for universities aiming to produce graduates equipped to tackle the complex problems of contemporary society. Drawing on the foundational principles of compassion-focused psychological therapies, we consider how compassion can be enacted within interpersonal interaction, curriculum design, and leadership culture in universities. We apply the insights of double empathy theory to the problem of overcoming barriers of difference in the classroom. Finally, we make recommendations for Universal Design for Learning (UDL) and strengths-based pedagogical approaches, which create a fit-for-purpose educational environment for the widest possible range of learners. This realignment with the neurodiversity paradigm offers an antidote to bolt-on provisions for students who differ from the neuro-normative, and might enable neurodivergent thinkers to flourish within and beyond higher education.

Keywords: neurodiversity, higher education, compassion, double empathy, Universal Design for Learning

1. Introduction

In recent years, widening access to higher education in the United Kingdom and globally has created a larger, more diverse student population ( Calderon, 2018; Higher Education Statistics Agency [HESA], 2022). Neurodiversity is a dimension of difference that has received relatively little attention in the higher education pedagogical literature, despite there being increasing numbers of neurodivergent students attending university internationally ( Pino and Mortari, 2014; Bakker et al., 2019). Neurodiversity can be understood as naturally occurring variation in the ways that humans perceive, experience and interact with the world, encompassing neurodevelopmental differences such as autism, attention deficit disorder (ADHD), dyslexia, developmental language disorder (DLD), dyscalculia, and developmental co-ordination disorder (DCD) (see Dwyer, 2022 for a discussion of more or less inclusive definitions of neurodiversity). Robust data on outcomes for neurodivergent students in higher education are not currently available; however, existing studies indicate that wellbeing and employment outcomes tend to be poorer in this population in comparison with their peers ( Anderson et al., 2017; Allen and Coney, 2019; Bayeh, 2022).

In this conceptual analysis, we draw on psychological understandings and applications of compassion to consider how universities can support neurodivergent thinkers to thrive. Cognitive diversity is essential in the search for solutions to the complex problems facing the world ( Sulik et al., 2021), and therefore universities must prioritise improved outcomes for neurodivergent students. We propose that this can be achieved by adopting compassionate pedagogies, including universal design for learning and strengths-based approaches ( Gibbs, 2017; Elsherif et al., 2022). Neurodivergent students, like all students, deserve fit-for-purpose learning experiences, and should not hold responsibility for educating their educators about their differences. The structures and policy context of higher education can act as a disincentive to personalised learning and teaching ( Waddington, 2017). Nonetheless, compassion-informed pedagogy, in which educators actively recognise the particular struggles that students face and seek to mitigate them, can be transformative for neurodivergent learners.

2. Neurodivergent students at university

Obtaining a clear picture of outcomes for neurodivergent students at university is complex, not least because many do not disclose their diagnosis, and others may not have a formal diagnosis when they commence their studies ( McLeod et al., 2019; Clouder et al., 2020). Evidence to date, which often relates specifically to autism, dyslexia and/or ADHD, suggests that academic attainment can be good, if students are well supported to complete their studies ( Richardson, 2009; Fabri and Andrews, 2016; Richardson, 2017). However, attrition rates are relatively high in this population, with poor mental health being just one of many contributing reasons ( Van Hees et al., 2015; Ghisi et al., 2016; Griffiths et al., 2019).

It is not difficult to imagine some of the contextual factors that underpin poor retention of neurodivergent students, some of which are discussed here. First, the 'hidden curriculum' at university - that is, the unwritten, and sometimes unintentional, institutional expectations of how students will behave, study, and interact, which are not explicitly taught - tends to exclude minoritised groups from reaching their potential ( Sulaimani and Gut, 2019). Second, neurodivergent students often come to university with a negative schema of education following their experiences at school ( Lithari, 2019; Mesa and Hamilton, 2022a, b). Experiences of non-accepting environments in earlier education can have long-lasting impacts, and can contribute to a negative sense of self, affected wellbeing and reduced quality of life for older students and adults ( Hong et al., 2016). Third, considering some of the specific challenges for neurodivergent students, the near total reliance on written forms of assessment in many degree programmes is a disproportionate barrier for dyslexic students ( Jacobs et al., 2022). ADHDers may find managing independent self-study and processing critical feedback particularly difficult (for an overview of rejection sensitivity in ADHD, see Bedrossian, 2021). For autistic students, achieving a sense of belonging in the university community may be a key challenge: social situations can be overwhelming but unavoidable, and socialising in different ways with peers can attract bullying or result in feelings of loneliness ( Bauminger et al., 2003; Gurbuz et al., 2019). Students often mask their differences, by suppressing natural neurodivergent responses and/or learning and imitating 'neurotypical behaviours' in an attempt to avoid negative responses from others. Masking difference can lead to exhaustion and burnout, disconnection from one's identity, and psychological distress ( Pearson and Rose, 2021).

We suggest that current educational contexts largely illustrate a conditional view of an acceptable student, i.e., a student is acceptable only when fitting to a neurotypical standard. Difference is often construed as negative, and only rarely understood as demonstrating novelty, originality or excellence in academia. For many neurodivergent students, experiences of personal confusion, navigation of multiple identities and labels through which to view themselves, and experiences of bullying and marginalisation, are all threats to holding a robust, compassionate view of the self within a university environment. Understandably, students often assume high personal responsibility for trying to make a success of their education. Many neurodivergent students describe having to act as self-advocates in order make others understand their difference, which can contribute to disenfranchisement from university communities ( Fabri and Andrews, 2016; Elias and White, 2018).

3. Contextual approaches to neurodiversity

Research into autism and other neurodevelopmental differences is undergoing a paradigm shift, away from medical models and towards neurodiversity approaches ( Dwyer, 2022; Pellicano and den Houting, 2022; for alternative perspectives and critiques of the neurodiversity paradigm, see Nelson, 2020; Singer et al., 2022). One key limitation of the medical paradigm in this field is its narrow focus on the individual as the unit of study, with the aim of identifying and ameliorating deficits. In contrast, research from a neurodiversity perspective foregrounds the person-in-context; impairment at the individual level is acknowledged where it exists, but harm associated with impairment is seen as a function of the interaction between the person and their environment ( Singer, 2017; Chapman, 2021). For instance, hyperactivity may be harmful for a child in a school with strict rules on sitting still in class, but harmless for that same child participating in an outdoor education class. It follows that interventions targeting the contexts in which neurodivergent people live, study and work are needed, in addition to existing interventions aimed at improving skills (or, more controversially, modifying behaviours) in individuals. Higher education is one such context, where structures, processes and pedagogies can be designed to be more inclusive for neurodivergent students and staff.

The social environment is central to any educational setting: learning depends on the interactions that take place between the student, their peers, academic and professional staff. Here the double empathy problem ( Milton, 2012) is pertinent. The double empathy problem refers to the reciprocal deficits in understanding that can occur between people who hold different norms and expectations of each other. Where communication preferences and sensory sensitivities vary across neurotypes, this problem can be particularly pervasive. A growing body of experimental research supports the premises of the double empathy problem; for example, neurotypical people are quick to form negative impressions of autistic people on the basis of scant information ( Sasson et al., 2017). Furthermore, certain types of communication, including information sharing, can be more successful within same-neurotype than cross-neurotype pairs ( Crompton et al., 2020). When people see the world from different perspectives, insight and compassion into each other's difference is more helpful than assuming that one experience is normative, while the other deviates from the norm.

In order to overcome double empathy barriers in the classroom, as educators we must reflect critically on our assumptions and practice. This could mean consciously avoiding the interpretation of students' behaviour from a default neuro-normative perspective. What could be the underlying reasons for a student keeping their eyes closed in class, or taking their seat at the last moment rather than queueing or conversing with peers? It could involve examining where our own knowledge of neurodiversity comes from and critically assessing the potentially stigmatising assumptions that we hold. Carefully considering the language that we use when discussing difference can be powerful in creating a more neurodiversity-inclusive learning environment. Avoiding the language of pathology (e.g., symptoms, comorbidities, high/low functioning) in favour of more neutral alternatives (e.g., characteristics, co-occurring considerations, individual abilities or support needs) is a simple modification that can have a meaningful impact on students' sense of place in the classroom, and in turn, how the education community of peers and staff make sense of difference ( Bottema-Beutel et al., 2021). There is good evidence, at least in the Anglophone world, that many autistic people prefer identity-first language (e.g., autistic student) over person-first language (e.g., student with autism), which can imply that the autism is separable from the person ( Kenny et al., 2015; Taboas et al., 2022; see Buijsman et al., 2022 for different terminology preferences in a Dutch sample). Analogous identity-first terminology for other neurodevelopmental differences is not yet clear or settled, but the language of neurodiversity is constantly evolving. Initiating open dialogue with neurodivergent students about their language preferences can help to mitigate the double empathy problem in the classroom.

Unfortunately, in order to access educational support at university via disability services, students often have to use the terminology of the medical model, emphasising their diagnosis and deficit and downplaying their strengths. Negotiating this dual reality is a current tension for many neurodivergent students, which signals the need for change towards universal design approaches. Implementing the insights of the neurodiversity paradigm in universities means going beyond simple adaptations or add-ons to current practice ( Petty et al., 2023). Currently the onus is too often on neurominority students to find a longer way around to meet neuro-normative expectations. To transform practice, learning and teaching must be designed for a neurodiverse student body, and learning contexts created in which neurodivergent students are seen, understood and enabled to thrive. Here, educators can harness the potential of compassionate pedagogy.

4. Learning from applications of compassion in other fields

Various definitions of compassion exist in the psychological and philosophical literatures. Most share two key components: (1) the propensity to notice suffering in oneself and others ( all others, regardless of minority status) without negative judgement and (2) the motivation to act to prevent or alleviate suffering ( Halifax, 2012; Gilbert, 2019). Nussbaum (2001) emphasises both its cognitive, evaluative nature and its teachability; we learn compassion through experience with diverse others (in real-world interactions and in simulated, fictional social worlds) and subsequent reflection on those experiences. In Nussbaum's conceptualisation, a prerequisite for compassionate responses to another's humanity is the acknowledgement of one's own human vulnerability.

Concepts of compassionate others, compassionate memories and compassionate spaces underpin many psychological therapeutic practices, notably within compassion-focused therapy ( Gilbert, 2007). For example, a client experiencing high anxiety and shame might be encouraged to explore early memories of these emotions, to notice where judgements and expectations from others caused a sense of threat, while working therapeutically to harness the soothing potential of compassion. This work might encompass memories from early education of being seen as 'naughty' or 'stupid.' Neurodivergent clients in particular may recall being told that they are not behaving like their peers, that they are not trying hard enough, or may have had their failings repeatedly highlighted by educators. Familiar stories are of not fitting in at school and not being 'good enough' as they are. Cumulative past experiences evoking feelings of threat and shame incentivise masking behaviour (e.g., suppressing stimming, forcing eye contact, copying others' behaviours) which is increasingly recognised as a driver of poor mental health in neurodivergent people ( Miller et al., 2021).

For a person to feel compassion for self and others, they need access to compassionate memories, i.e., memories of an interpersonal interaction with another who is warm, non-judgmental, sensitive to and tolerant of differences. They also need access to 'safe spaces,' places of welcome, belonging and enjoyment ( Lucre and Clapton, 2020). These are experienced and consequently become expected. Such memories may be difficult for neurodivergent individuals to bring to mind, given the dominant societal frameworks of deficit and exclusion ( Botha et al., 2020). Within psychological therapy there is an increasing focus on encouraging the individual to thrive with difference, without intending to treat or reduce the expressions of neurodiversity ( McVey et al., 2021); compassion-focused therapies are increasingly indicated for neurodivergent clients ( Robinson, 2018). This approach can serve as a useful model for education.

Important tenets of compassion in psychological therapy include warmth from the self to the self, and warmth from others ( Gilbert and Bailey, 2000). In contrast, an attack and counter-attack dynamic can be at play for neurodivergent students, whereby feeling misunderstood causes them to respond with annoyance or withdrawal from the education system. 'Winning,' or asserting their learning needs, for the more proactive students will not necessarily resolve the difficulties according to concepts of compassion, because warmth and support are missing. Furthermore, self-compassion requires a desire to grow, to look forward with hope for success and to build on positive attributes of the self. Neurodivergent students' self-belief and ambitions for employment post-graduation are often challenged by negative experiences of academic discrimination ( Cheriyan et al., 2021). Within schools and universities, where being neurodivergent often makes you a more 'troublesome' student, thriving is typically curtailed, with negative implications for future hopefulness. Implementing concepts from the foundational underpinnings of compassion-focused therapy ( Gilbert, 2007) in educational contexts holds promise, if institutions can establish a shared intention to include all students and recognise the mutual benefits that arise from doing so.

We can borrow practical recommendations from other sectors, which are revising their ways of working collaboratively with neurodivergent clients, to develop the quality of our interactions in higher education. Maddox et al. (2020) have drawn attention to the barriers and facilitators to therapeutic working that tend to be put in place by clinicians, care coordinators and service managers within healthcare settings. Their recommendations for clinicians working with autistic clients include: clearly explaining what clients can expect and what is expected of them; establishing mutual understanding of what is being spoken and what is being implied; providing structure for in-person sessions and independent tasks; and considering ways to limit time spent in crowded, brightly lit, or noisy spaces, such as waiting rooms. Considerations for different neurodivergent client groups include the use of planned breaks and switching between tasks to avoid prolonged attentional demand or too-challenging stretches of high-priority work ( Young, 2012). These good practice guidelines from healthcare can often be transferred to the classroom, allowing the unwritten curriculum to be minimised so that students can learn.

In healthcare contexts, compassionate interactions have been shown to calm, but not sedate patients. Adopting a compassionate approach does not make appointments longer and may reduce long-term patient costs, such as fewer onward referrals and better medication adherence ( Trzeciak et al., 2019). If we can adopt similar principles in education, we might expect students to be more relaxed and better engaged, to have less need for supplementary study skills or wellbeing support from universities, to reach closer-to-potential academic achievement and onwards employment. These intentions are currently speculative, awaiting more investment in research.

5. Conceptualising compassion in educational contexts

Educators have a unique opportunity to cultivate compassion within the learning environments that we create. (Note that we advocate for universal compassion, rather than compassion specifically for a minority.) However, the development of compassion and other 'intellectual virtues' receive limited recognition as legitimate learning goals in the current higher education climate ( Maxwell, 2017). Instead, utilitarian values of competition, choice, independence, value for money and individual achievement dominate in many countries ( Sauntson and Morrish, 2010). Waddington (2018, p. 87) argues that, in an era of marketisation, contemporary university cultures in the United Kingdom and elsewhere are often characterised by "subtle, but powerful, competition and striving for prestige and dominance ... [stifling] the conditions in which compassionate pedagogy can survive and flourish." Creating the conditions for a compassionate learning environment can therefore be highly challenging for educators charged with meeting an array of market-driven targets.

Notwithstanding this unconducive context in the sector, students, and especially those in minoritised groups, flourish in learning environments in which they feel that they belong and are valued. Similarly, educators are empowered to create compassionate learning environments where there is a compassionate leadership culture in universities ( Belak and Waddington, 2021). Studies within other organisational cultures have characterised compassionate leaders as: attending to and listening with interest; seeking to understand challenges; empathising; and acting to remove obstacles and obtain resources where they are needed ( West and Chowla, 2017). If these behaviours can be enacted by university leaders, a culture is established which values and supports compassionate pedagogies, to the benefit of students and staff.

Hao (2011, p. 92) characterises compassionate pedagogy as underpinned by "a commitment that allows educators to criticise institutional and classroom practices that ideologically place underserved students at disadvantaged positions, while at the same time be self-reflexive of their actions through compassion as a daily commitment." Social, pedagogical and physical aspects of the learning environment can place neurodivergent students at a disadvantage, which often goes unnoticed. A common theme in the educational experiences of these students is anxiety, triggered by uncertainty of what is required of them in the learning situation, interactions with others inside and outside of the classroom, fear of failure, managing time, perfectionism, and additional causes of stress and fatigue not shared by their peers (e.g., sensory stress), among many other factors ( Gurbuz et al., 2019; Clouder et al., 2020). It is important to note that anxiety is not a characteristic of neurodivergence per se, but rather a likely outcome of cumulative experiences, including marginalisation and stigma, through the lifespan. Additionally, employment struggles, financial hardship and co-occurring mental health conditions are vulnerability experiences that differ between neurodivergent and neurotypical peers ( Griffiths et al., 2019). When neurodivergence contributes to students feeling anxious in the classroom, learning potential and engagement is seriously curtailed. There are negative implications for attendance, joining in when present in the classroom, sharing activities with peers, and for all measures of academic attainment ( LeDoux, 1998; Jones et al., 2019).

Anxiety is in essence a response to threat. In educational contexts, threat can come from pedagogical and organisational practices that encourage students to dwell on their failings, to feel disappointed in themselves, and to doubt their futures (mirroring the threats to self-compassion as conceptualised in compassion-focused therapy; Gilbert et al., 2004). Conversely, education has the capacity to transform the lives of those who have experienced discrimination and oppression ( Freire, 2006). A learning environment where difference is accepted and where each student can contribute and find a sense of belonging can reduce threat, foster self-compassion, and elicit more compassionate responses from others. These experiences build banks of compassionate memories of the self in education.

6. What would compassionate pedagogy for neurodivergent students look like?

Implementing the principles of compassion in higher education settings is more complex than in the context of one-to-one therapy. Educators have to balance the needs and interests of multiple stakeholders; staff workloads are perennially high, and institutional structures and processes tend to be inflexible. Nonetheless, if the challenges posed by the neurodiversity paradigm can be framed as an opportunity to rethink and improve pedagogical practice, this is likely to be to the benefit of all students. In making the following recommendations, we draw on the expertise of neurodiverse, multi-stakeholder teams of students, colleagues and authors (e.g., Spaeth and Pearson, 2021; Dwyer et al., 2022; Elsherif et al., 2022; Farrant et al., 2022).

There is a clear role for university senior leadership teams in improving experience and outcomes for neurodivergent students. Including neurodiversity as a dimension of difference in equality, diversity and inclusion (EDI) reviews and initiatives is an important starting point ( Dwyer et al., 2022). Any campus-wide review, investment and enhancement activity should be driven by neurodivergent staff and students in collaboration with neurotypical allies. Since experiences of discrimination, stigma and bullying contribute to poor educational outcomes for neurodivergent students, investment in university-wide training in neurodiversity is warranted to the same extent as other campus-wide EDI training. Representation matters for student belonging and aspiration; human resource leaders can therefore ensure that hiring practices are neurodiversity-inclusive, and that neurodivergent staff in the university community are appropriately supported to fulfil their roles and progress to leadership positions. In planning for the development of campus estates, leaders can consider the sensory environment (e.g., adjustable lighting, seating selections, noise and heat levels, accessibility of quiet spaces to all members of the university community). Leaders in professional service roles can design student support services that are joined up, transparent to access and simple to navigate to reduce the self-advocacy burden on students. Providing services based on need, rather than disability diagnosis is recommended, and neurodiversity-affirming mental health support services are particularly important ( McVey et al., 2021; Chapman and Botha, 2022; Petty et al., 2023). Finally, investment in transition support programmes into and out of university can impact retention of, and graduate outcomes for, neurodivergent students ( Moriño and Biagiotti, 2022).

For academic staff working directly with students in the classroom, a compassion-informed approach requires that we notice distress (e.g., in relation to sensory stress or high anxiety), actively listen to neurodivergent students, are curious and empathic in our response (mindful of implicit biases and double empathy barriers), and work together with students to allow them to feel that they belong in, and can contribute to, the learning community. It is important that educators are alert to the possibility that neurodivergent students may be masking differences or difficulties, and provide alternative ways for them to communicate their needs to maximise their learning. Useful questions for educators to ask include: How much choice is there for students to demonstrate a range of skills and capabilities? How is this student learning about themselves in a way that is not deficit- or problem- focused? How is their experience in this class contributing to an accumulation of safe and positive memories of themselves in education?

In addition to noticing distress, compassionate educators notice strengths and can harness these to scaffold students' engagement and learning. For example, a student with strong attention to detail might be assigned a role of leading on the data analysis of a research project, monitoring adherence to checklists, protocols or assessment briefs, or finalising presentation materials in a group project. Building in flexibility to assessment schedules could, for example, allow a student with high social anxiety but strong information technology skills to demonstrate their learning in an animated video as an alternative choice to a live presentation in front of an audience. Diversification of assessment types through the course of a programme of study provides all students with opportunities to excel. While narrowly prescribed ways of working are still common in many jobs, increasingly employers are recognising the value of hiring neurodiverse teams and accommodating communication differences ( Krzeminska et al., 2019). Universities can do the same. Similarly, allowing for a variety of communication channels between staff and students (e.g., class discussion forums, direct messages or text-chat, in-person tutorials) accommodates communication differences and allows all students to feel part of a learning community. Students should be empowered to make personal choices about their studies that are enabled by the education infrastructure.

Designing learning to reduce anxiety would involve minimising ambiguity at all levels: ensuring materials are available in advance, utilising exemplars where appropriate, and responding empathetically to requests for clarification, as misunderstandings will almost certainly be a shared responsibility. Expectations of students would be made clear and fully explicit, for example by agreeing a class contract at the beginning of a course of study, which can be particularly helpful in reducing hidden curriculum barriers for neurodivergent students. Regularly highlighting the relevance of course content to learning outcomes (i.e., constructive alignment; Biggs, 1996) supports engagement and management of 'information overload.' As educators we can continuously reflect on the accessibility of our own communication, aiming for maximum clarity, concision and informativeness. Where non-literal language such as metaphor or sarcasm is used, are we providing alternative ways for students to access meaning? Are we allowing adequate time for students to process verbal instructions in the classroom, and/or supplementing with written instructions?

Important concepts of compassion include self-care, empathy and distress tolerance ( Gilbert, 2007). We can learn from research that has explored ways in which neurodivergent people have described their fit-for purpose, personal ways of coping with stress and distress ( Young, 2012; Bearss et al., 2016; Petty et al., 2022). To increase tolerance of distress, is a student able to modify sensory stimuli as the norm, for instance by wearing ear covers? If the physical classroom environment causes sensory stress, is there scope for students to complete tasks in a quieter environment and use online networking to check in through the class? Attendance at in-person classes is often lower in neurodivergent than other student groups for a variety of reasons; self-care might require a student to temporarily withdraw from interactions with other people. Hybrid or blended delivery could be effective in allowing students to continue to access their courses during such periods ( Singh et al., 2021). More important, perhaps, is to meet students where they are in terms of attendance and increase accessibility of classroom learning in consultation with them. This could include reducing attentional demands by presenting information in small chunks, building in regular breaks, finding opportunities for movement where possible, or modifying seating arrangements ( Honeybourne, 2018). These recommendations reflect personal accounts of coping with distress from neurodivergent people; their implementation may reduce disadvantages associated with being in a neurominority, while maintaining the ability to receive education.

7. Universal design for learning

Many of the recommendations in the preceding section align with the principles of Universal Design for Learning (UDL; Rose et al., 2006; CAST, 2018). Fundamentally, UDL is an antidote to bolt-on provisions for students 'with issues,' who are not always well served by overworked staff and systems ( Williams, 2019). Current support tends to operate on a 'disability services' model: assess and diagnose the student; individualise a learning support plan; add in adjustments to core teaching. This model is, perhaps unintentionally, underpinned by deficit thinking. Funding-specific support relies on diagnostic labels, necessitates onerous and lengthy processes, and places an onus on the student to advocate for accommodations. While seeking support for learning, a process which can take several months, a neurodivergent student is likely to experience a poor person-context fit at university, and may escalate from one source of support to the next while appropriate interventions are not available ( Lightner et al., 2012). It is important to note that, within these structural constraints, individualised support via disability services can be compassionate and neurodiversity-affirmative.

As an alternative to bolt-on accommodations, we propose UDL as a compassionate pedagogy. A UDL approach to curriculum design embeds flexibility and choice in order to make learning accessible to the widest possible range of students. Within this framework, information is represented in multiple modalities (e.g., verbal explanations, visual diagrams, written text); students are enabled to express their knowledge in alternative ways (e.g., opt to prepare a written report or an oral presentation); and student engagement is scaffolded (e.g., supporting self-regulation and persistence by giving students autonomy, varying challenge level, choice, and creating a safe learning environment) ( Boothe et al., 2018). The evidence base for the effectiveness of UDL for student outcomes is in its infancy. Existing research suggest that UDL is an effective methodology for improving the learning process for all; students undertaking UDL courses report higher satisfaction, greater engagement, and reduced barriers to learning ( Capp, 2017; Soek et al., 2018). Whether effects transfer to improved attainment and reduced attrition is still to be determined.

If curricula are proactively designed for - and in consultation with - diverse learners, it is possible to move away from the reliance on students disclosing their diagnosis and having to self-advocate for individualised support for learning. Such an approach enables universities to become more neurodiversity-inclusive, while reducing demands on over-stretched student support services.

8. Employability and post-university

Before concluding, it is worth considering one of the many impactful outputs of accessible and compassionate pedagogic practice; that is, a carry-forward of positive academic experiences in terms of student self-esteem, hopefulness and preparedness for the workplace ( Kuriyan et al., 2013; Cheriyan et al., 2021). These conditions occur when students find their place and their strengths in educational settings. Importantly, employers are starting to see the competitive advantage of a neurodiverse workforce and to consider ways to make workplaces more inclusive ( Kirby and Smith, 2021). Overlapping with the application of UDL in education, the following examples of recommended good practice are from accounts of successful employment of a neurodiverse workforce. Recommendations for employers include: offering flexible working hours where possible, considering choice of seating in the workplace, allocating tasks based on employee strengths, explicitly welcoming neurodiversity in the workforce through recruitment and hiring processes, and naming a contact person for consistency and clarity of communication ( Gordon and Fabiano, 2019; Maras et al., 2021; Remington et al., 2022).

Nonetheless, the current disappointing reality for the majority of neurodivergent students is to expect lower likelihood of graduating, accessing postgraduate education, finding appropriate employment that matches their skills and abilities, and enjoying stability in employment ( Scott et al., 2015; Gordon and Fabiano, 2019; Moriño and Biagiotti, 2022). Success in employment builds on an accumulation of positive past experiences, in education and previous employment. In this respect, 'employability' holds onto the coattails of educational practices. The techniques discussed through this paper provide ways in which educators can help neurodivergent students to transition their identity to the workplace, notably at a time of anxiety and when delving into a difficult-to-imagine future ( Vincent, 2019). There are ample opportunities to transfer learning of good practice from education through to employment.

9. Discussion and conclusion

Universities and other higher education institutions ought to be an ideal context for neurodivergent flourishing. Studying at post-secondary level allows for increased independence, autonomy and self-advocacy, for example through the opportunity to follow passions and subjects of focused interest; choice over how, when and where to do independent study; increased flexibility of routines; and opportunities to establish new peer groups around shared interests, all within a relatively safe space. On average, university settings likely exhibit greater tolerance of difference than other contexts, both preceding and following higher education. Universities can therefore play an important role in promoting lifelong wellbeing, holistic identity development and skill learning for neurodivergent students. Collectively, day-to-day experiences of interpersonal interactions that model sensitivity, tolerance and kindness, as opposed to misunderstanding and negative judgement, can be personally transformative and lead to improved employment outcomes.

However, we know that not all neurodivergent students thrive at university, and the barriers to thriving are complex. Many experience high anxiety about exposing their difference, within systems and processes that highlight deficit and put the onus on the student to obtain support. The hidden curriculum can disproportionately exclude neurodivergent students. High demands on language, literacy, numeracy, executive functioning and social interaction in university courses pose specific challenges for individuals, depending on their profile of strength and difficulty. Pedagogical practices that are not designed for cognitive diversity inhibit students from developing a sense of competence and belonging in the learning community. Some neurodivergent students may also require enhanced support to successfully negotiate the transition from home to university, extracurricular aspects of campus life, and the transition from post-secondary education to the workplace, but such support is not universally available. In combination, these barriers can prove overwhelming, with implications for attrition, wellbeing and graduate outcomes.

The neurodiversity paradigm moves the focus for change to contexts, in contrast to the historically dominant medical model assumption that interventions should target deficits in the individual. This shift is beginning to play out in therapeutic, healthcare and educational settings, but there is more work to do. The challenges of educating a neurodiverse student body (and embodying a neurodiverse staff team, through recruitment and mentoring) can be reframed as an opportunity to transform practice. Educators and educational leaders can proactively design courses and systems that are neurodiversity-affirming and neurodiversity-inclusive. At present, pockets of good practice in universities tend to occur serendipitously, rather than as a result of strategic planning. Considering neurodiversity as a dimension of EDI that overlaps with, but is not synonymous with, disability would be an important step towards making university communities more inclusive for their neurodivergent members.

In this article, we have argued that the concept of compassion, as applied in psychological therapies, offers a useful template for educators working with neurodiverse student populations. In practice, this could mean noticing students' distress in the classroom and acting to alleviate it, harnessing individual strengths to increase students' sense of competence, and implementing principles of UDL to increase flexibility in how students access course content and demonstrate their learning. These strategies can help neurodivergent students to build a positive schema of self-in-education, which can feed forward to post-university settings and reduce the harmful impetus to mask difference. Society benefits from cognitive diversity in myriad ways; we call on university leaders and educators to act to make higher education a more compassionate context for neurodiversity.

Author contributions

LH conceptualised and wrote the first draft of the manuscript. SP contributed to conceptualisation and wrote sections of the manuscript. Both authors contributed to manuscript revision, read, and approved the submitted version.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

References

Allen M., Coney K. (2019). What happens next? 2019: a report on the first destinations of 2016/17 disabled graduates. The Associate of Graduate Careers Advisory Services. Available at: https://www.agcas.org.uk/Latest/launch-of-what-happens-next-2019

Buijsman R., Begeer S., Scheeren A. M. (2022). 'Autistic person' or 'person with autism'? Person-first language preference in Dutch adults with autism and parents. Autism:136236132211179. doi: 10.1177/13623613221117 [[PubMed] [PMC free article] [CrossRef] Google Scholar]

Calderon A. (2018). Massification of Higher Education Revisited. RMIT University. Available at: http://cdn02.pucp.education/academico/2018/08/23165810/na_mass_revis_230818.pdf

CAST (2018). UDL and the Learning Brain. Available at: https://www.cast.org/products-services/resources/2018/udl-learning-brain-neuroscience

Chapman R., Botha M. (2022). Neurodivergence-informed therapy. Dev. Med. Child Neurol. doi: 10.1111/dmcn.15384, PMID: [[PubMed] [CrossRef] Google Scholar]

Dwyer P., Mineo E., Mifsud K., Lindholm C., Gurba A., Waisman T. C. (2022). Building neurodiversity-inclusive postsecondary campuses: recommendations for leaders in higher education. Autism Adulthood. doi: 10.1089/aut.2021.0042 [[CrossRef] Google Scholar]

Elsherif M. M., Middleton S. L., Phan J. M., Azevedo F., Iley B., Grose-Hodge M., et al.. (2022). Bridging neurodiversity and open scholarship: how shared values can guide best practices for research integrity, social justice, and principled education. Preprint. doi: 10.31222/osf.io/k7a9p [[CrossRef] Google Scholar]

Farrant F., Owen E., Hunkins-Beckford F., Jacksa M. (2022). Celebrating neurodiversity in Higher Education. The Psychologist. Available at: https://www.bps.org.uk/psychologist/celebrating-neurodiversity-higher-education

Higher Education Statistics Agency [HESA] (2022). Higher Education Student Statistics: UK, 2020/21. Available at: https://www.hesa.ac.uk/news/25-01-2022/sb262-higher-education-student-statistics

Mesa S., Hamilton L. G. (2022b). School Transitions for Autistic People in Mainstream Settings: A Research Report. Available at: https://www.yorksj.ac.uk/media/content-assets/research/institute-for-social-justice/School-transitions-for-autistic-pupils-report.pdf

Petty S., Trickett A., Thompson K., Garbutt R., Saunders M. (2022). Revising our understanding of emotional distress for autistic adults: call for research. Curr. Psychol. doi: 10.1007/s12144-022-03254-0 [[CrossRef] Google Scholar]

Singer A., Lutz A., Escher J., Halladay A. (2022). A full semantic toolbox is essential for autism research and practice to thrive. Autism Res. doi: 10.1002/aur.2876, PMID: [[PubMed] [CrossRef] Google Scholar]

Singer J. (2017). Neurodiversity: The Birth of an Idea. Self-Published.

Spaeth E., Pearson A. (2021). A reflective analysis on neurodiversity and student wellbeing: conceptualising practical strategies for inclusive practice. PsyArXiv [Preprint]. doi: 10.31234/osf.io/dc3gw [[CrossRef] Google Scholar]

Williams M. (2019). Review of Support for Disabled Students in Higher Education in England. Institute for Employment Studies. Available at: https://www.officeforstudents.org.uk/media/a8152716-870b-47f2-8045-fc30e8e599e5/review-of-support-for-disabled-students-in-higher-education-in-england.pdf

Articles from Frontiers in Psychology are provided here courtesy of Frontiers Media SA

# data[].attributes.attachment_link.title
Compassionate pedagogy for neurodiversity in higher education: A conceptual analysis

# data[].attributes.attachment_link.description
The neurodiversity paradigm challenges pathologising accounts of neurodevelopmental differences, including autism, attention deficit disorder (ADHD), dyslexia, developmental language disorder (DLD) and others. From a neurodiversity perspective, these ...

# data[].attributes.attachment_link.readable_text
BMC Public Health 19, Article number: 1637 (2019) Cite this article

114k Accesses

150 Citations

370 Altmetric

Metrics

Abstract

Health inequities are widespread and persistent, and the root causes are social, political and economic as opposed to exclusively behavioural or genetic. A barrier to transformative change is the tendency to frame these inequities as unfair consequences of social structures that result in disadvantage, without also considering how these same structures give unearned advantage, or privilege, to others. Eclipsing privilege in discussions of health equity is a crucial shortcoming, because how one frames the problem sets the range of possible solutions that will follow. If inequity is framed exclusively as a problem facing people who are disadvantaged, then responses will only ever target the needs of these groups without redressing the social structures causing disadvantages. Furthermore, responses will ignore the complicity of the corollary groups who receive unearned and unfair advantage from these same structures. In other words, we are missing the bigger picture. In this conceptualization of health inequity, we have limited the potential for disruptive action to end these enduring patterns.

The goal of this article is to advance understanding and action on health inequities and the social determinants of health by introducing a framework for transformative change: the Coin Model of Privilege and Critical Allyship. First, I introduce the model, which explains how social structures produce both unearned advantage and disadvantage. The model embraces an intersectional approach to understand how systems of inequality, such as sexism, racism and ableism, interact with each other to produce complex patterns of privilege and oppression. Second, I describe principles for practicing critical allyship to guide the actions of people in positions of privilege for resisting the unjust structures that produce health inequities. The article is a call to action for all working in health to (1) recognize their positions of privilege, and (2) use this understanding to reorient their approach from saving unfortunate people to working in solidarity and collective action on systems of inequality.

Peer Review reports

Background

The narrator at the start of a YouTube video instructs, "Count how many times the team wearing white passes the ball" [ 1]. Six people enter the screen: three wearing white shirts, and three wearing black. They stand in a circle and pass basketballs to each other for 90 seconds. At the end of the video, the narrator says, "The correct answer is 16 passes. Did you spot the gorilla?" A portion of the audience typically misses the gorilla and is baffled by the question [ 2]. The video then repeats to show again that in the midst of the basketball passing, an adult dressed as a gorilla walks into scene, looks at the camera thumping his chest, then leaves. This short exercise demonstrates how it is possible to miss something as obvious as a gorilla, but also invites the audience to imagine how it could be otherwise. That is, the audience had their capacity built to count the number of passes by the team wearing white whereas the narrator could have built the capacity of the audience to spot the gorilla. So it is with privilege: that it is possible to miss something as obvious as an adult in a gorilla suit walking into the screen. It follows that if one missed the gorilla (or privilege), then there is no possibility of engaging in conversation about the gorilla. One might even question the legitimacy of other people's claims about the existence of a gorilla (or privilege). However, the narrator could have built the capacity of the audience to see the gorilla, and so too can people build their capacity to see privilege [ 3]. Building this capacity requires both learning and unlearning, and is the aim of this article.

This article provides a framework, the Coin Model of Privilege and Critical Allyship, for conceptualizing privilege in order to address the even more important question of what to do about it, which is termed practicing critical allyship. In particular, I explore how privilege and allyship are related to health inequity - that is, disparities that are systemic, avoidable, and unfair [ 4]. Efforts to address inequities tend to frame concerns as unfair consequences of social structures that result in poor health, without consideration of the ways in which these same social structures give unearned advantage to others. Unearned advantage, or privilege, is the gorilla. Practicing critical allyship is the orientation to guide action for people who find themselves in positions of privilege in relation to a particular system of inequality.

Disappearing privilege from discussions of health equity is an important shortcoming, because the framing of a problem sets the universe of possible solutions that will follow. If inequity is framed exclusively as a problem facing people who are marginalized, then responses will only attempt to address the needs of these groups, without redressing the social structures causing this disadvantage, or the complicity of the corollary groups who receive unearned (and unfair) advantage from these same structures [ 5 , 6]. This approach, often called anti-oppression [ 7], is well developed in other fields [ 8, 9, 10, 11] but less so within health research [ 12]. To be clear, the ideas presented in this article about privilege and oppression are not new; they have been articulated, advanced and argued for decades, largely by "marginalized" groups to people in positions of privilege who have not been ready or willing to listen. In this article, I seek to translate these ideas in a new way for a general health audience, and it is noteworthy that successful uptake of the ideas in this version must be understood as inextricably linked to my position as someone "on the top of many coins".

The first part of this article introduces the metaphor of the coin, a framework for understanding how social structures offer both unearned advantage ('privilege') and disadvantage ('oppression'). I adapted the coin metaphor from the schematic of privilege, domination and oppression presented by Kathryn Pauly Morgan in "Describing the Emperor's New Clothes: Three Myths of Educational (In)Equality" [ 13]. The Coin Model of Privilege and Critical Allyship aims to inform action to resist and dismantle the unjust structures that produce inequities. The model embraces an intersectional approach to consider how systems of inequality, such as racism, heterosexism and ableism, interact to produce complex patterns of unearned disadvantage and advantage. The second part of this article introduces principles for practicing critical allyship and their implications for mitigating health inequities.

The coin model

The coin

There are norms, patterns and structures in society that work for or against certain groups of people, which are unrelated to their individual merit or behaviour. Put another way, there are (often invisible) systemic forces at play that privilege some social groups over others, such as sexism, heterosexism, racism, ableism, settler colonialism, and classism [ 14]. These unfair social structures have profound effects on health, producing inequities in morbidity and mortality.

Racism is well demonstrated to adversely affect the health of non-white people through interconnected structural, institutional, cultural and psychosocial pathways [ 15, 16]. For instance, there is a breadth of evidence in the American context demonstrating that people who are racialized receive lower quality health services and are less likely to receive routine medical procedures than white Americans [ 17]. Racism and its interconnection with colonialism have created profound health inequities for Indigenous Peoples, including lower life expectancy (by more than 5 years) than the non-Indigenous population in the United States [ 18, 19, 20]. Women and girls have worsened health outcomes, diminished capacity to realize health-related human rights, and reduced access to healthcare, which are related to sexism, and its intersections with class, race and ability [ 21, 22, 23]. People who are gay, lesbian or bisexual face health inequities related to heteronormativity and homophobia [ 24, 25]. Furthermore, there is worsened health among transgender people due to cisnormativity and transphobia, which is exacerbated by other systems of oppression [ 23, 26- 27]. A study in the Canadian province of Ontario found that one in ten trans people who had accessed an emergency room had been refused care or had care terminated prematurely because they were trans, and 40% had experienced discriminatory behaviour from a family doctor [ 27]. A final example is health disparities among people with disabilities related to ableism and its intersections with other systems of inequality [ 28, 29]. Census data from 2015 demonstrated that nearly 14% of Australians with a disability reported disability-based discrimination in the previous year; that disability-based discrimination was more common among people who were unemployed or poor; and, that disability-based discrimination was associated with higher levels of psychological distress and poorer self-reported health [ 29]. These systems of inequality are bad for health.

In the Coin Model, each system of inequality is conceptualized as a coin. Coins do not reflect the individual behaviour of good or bad people. Rather, they are society-level norms or structures that give advantage or disadvantage regardless of whether individuals want it or are even aware of it. Each coin represents a different system of inequality.

These social structures, or coins, give unearned advantage or disadvantage according to one's relationship to that particular system of inequality. For instance, one may consider the coin (or system of inequality) of heterosexism. Heterosexuality is romantic or sexual attraction to people of the opposite sex. Heterosexism, a dominant norm in many societies, views being heterosexual as the only normal and right way to be. People who happen to fit this norm because they are straight (i.e., heterosexual) enjoy advantages from this social structure. For instance, they can openly express affection without fear of discrimination or violence. They see their way of life validated and valued through its regular, positive, and default position as the normal way of being reflected in legal frameworks and popular culture. However, straight people did not choose to be straight; they just are. They did not earn this advantage; rather, they lucked into it by their natural preference for whom they love being in alignment with this broader social norm. They likely did not ask for these benefits, but they receive them all the same. They may not even be aware that they are receiving unearned advantage, but they receive it nonetheless [ 30].

Conversely, people who are not straight do not enjoy this freedom from discrimination and violence, or the sense of inclusion and belonging that results from this social structure. People who are not straight, such as people who identify as gay, lesbian, bisexual, asexual, or two-spirit, did not choose to be that way; they just are. However, their natural preference for whom they love is not in alignment with the dominant norm of heterosexism and, as such, they receive unearned disadvantage. They did nothing to earn it, but they receive it nonetheless. Furthermore, while unearned advantage can be difficult to see, unearned disadvantage is often highly visible to those who experience it.

The bottom and top of the coin: oppression and privilege

It is the same social structure, or coin, that gives unearned disadvantage to some and unearned advantage to others. Groups of people who are disadvantaged by this social structure are viewed as being on the bottom of the coin (see Fig. 1). In this model, I call this side of the coin oppression. Because of the dire health effects resulting from this unfair disadvantage, these are the groups commonly targeted in health promotion research and interventions. The names for these groups are many and familiar, including marginalized populations, disadvantaged groups, vulnerable communities, high-risk groups, priority neighbourhoods, or hard-to-reach populations.

Other groups of people receive advantage from these same social structures, and are viewed as being on the top of the coin. These groups receive benefits from the structures that others do not, which they did not earn. Rather, they receive the benefit because they luck into being in alignment with the norms of that particular social structure. In this model, I call the position on the top of the coin privilege.

Terms used to describe groups of people who enjoy unearned health benefits as a result of systems of inequality are uncommon and hard to imagine (e.g., unfairly advantaged groups, free-lift populations). To view those on the top of the coin as "normal" or "average patients" is erroneous since, by definition, the top of the coin represents people who are the recipients of unearned and unfair benefits because their way of being is valued over others. The goal is not to move people from the bottom of the coin to the top, because both positions are unfair. Rather, the goal is to dismantle the systems (i.e., coins) causing these inequities.

Drawing attention to the top of the coin is important because inequity is relational: the bottom of the coin is disadvantaged compared to the top. Yet, issues of health equity are often framed exclusively as problems facing people on the bottom of the coin. Disappearing the top of the coin, and often the coin itself, functions to maintain the status quo because what one frames as the problem sets the universe of conceivable actions to address it. When the problem is framed as challenges faced by the members of a "vulnerable group" (i.e., bottom of the coin), then potential solutions will focus exclusively on interventions to address their issues. Should actions address the needs of these groups? Of course; these responses are deeply important for redressing existing inequities. However, the bottom of the coin is commonly framed as the entire story of health equity as opposed to just one part. If the problem was viewed not only as the bottom of the coin, but also the coin itself (i.e., the unjust social structure that gives unearned disadvantage to people on the bottom), then a different set of solutions could follow, such as changes to policy and law to create safeguards against discrimination produced by the system of inequality. Indigenous physician and public health leader, Marcia J. Anderson, succinctly captures this point as follows:

"From now on instead of 'vulnerable people' I'm going to use the phrase 'people we oppress through policy choices and discourses of racial inferiority.' It's a bit longer but I think will help us focus on where the problems actually lie." [ 31]

For instance, the coin of ableism reflects the social structure that discriminates against disabled people in favour of people who fit a socially-constructed norm of able-bodiedness [ 32]. In an ableist worldview, there is a particular version of ability that is assumed to be normal or natural (top of the coin), and people who cannot meet this expectation (bottom of the coin) are viewed as a problem who should strive to become, or assimilate to, the norm. Ableism views disability as a mistake or failing rather than a simple consequence of human diversity, like sexual orientation or gender.

Consider the different solutions that become imaginable depending on whether one views the problem as the bottom of the coin (i.e., disabled people) or the coin itself (i.e., ableism). Solutions addressing the bottom of the coin strive to support disabled people to achieve the norm of able-bodied people, including medical care and rehabilitation to fix disability within the body. Conversely, if one views the problem as the unfair social structure of ableism, then the cause of disability shifts: instead of being located within an individual's body, disability is understood as resulting from the social, attitudinal and political environment. Responses become focused on social change to achieve equity for people with disabilities in the same light as equity for other disadvantaged groups where prejudice, segregation, and inaccessibility are viewed as the problem. Responses might focus on rights-based approaches aligned with the United Nations Convention on the Rights of Persons with Disabilities. Actions would shift from focusing on disability as a mistake to instead celebrating difference by creating flexible systems (e.g., through policies, the built environment) that enable and liberate as opposed to disable and exclude.

Problematizing the coin of ableism also shines a spotlight on the profoundly disabling effects of stigmatizing attitudes commonly held by able-bodied people. In many cases, such effects are unintended and unknown to those reproducing them, but profoundly impactful all the same, which brings us to the top of the coin.

Seeing the gorilla: recognizing the effects of invisiblizing privilege

The coin of settler colonialism in the context of Canada provides another useful illustration. If the coin is settler colonialism, then the group receiving unearned disadvantage on the bottom of that coin is Indigenous Peoples. Since the Idle No More movement and 2015 report of the Truth and Reconciliation Commission of Canada, the history and legacy of colonization are starting to be recognized within Canadian society [ 33, 34]. For instance, there is greater attention to the ongoing, devastating effects of Indian Residential Schools on Indigenous Peoples, the harmful effects of the Government of Canada's Indian Act, and the rights-violations embedded in the inequitable provision of public funding to ensure basic determinants of health (e.g., clean drinking water, quality primary education) within Indigenous communities. These examples draw attention to the coin (i.e., settler colonialism) as the source of profound health inequities between Indigenous and non-Indigenous people in Canada. The problem has been relocated from Indigenous People (the bottom of this coin) to the structures (the coin) that create the conditions that produce unearned and unfair disadvantages. The growing ability to see, and thereby devise solutions to address, the coin is an important marker of progress toward dismantling this inequity.

But Indigenous People and settler colonialism are not the complete picture. Similarly, disabled people (bottom of the coin) and ableism (the coin), are not the complete picture. What about the people on the tops of these coins? Who are they? What is their role in dismantling, or as is often the case, unintentionally strengthening the coin?

A key task for people who find themselves on the top of a coin is to see the gorilla; that is, to understand that there is a coin, that it has two sides, and that they occupy the position of unearned advantage (i.e., privilege) on the top. For instance, if Indigenous People are on the bottom of the coin, it is non-Indigenous people (often referred to as settlers) who receive unearned and unfair advantage from these same structures. Seeing the gorilla in this instance means developing the capacity to ask and answer questions such as, "In which ways did I benefit from settler privilege today?" and "In what ways did my actions today reflect and thereby reinforce the coin of settler colonialism?"

In many cases, people on the top of a coin did not ask for the unearned advantage that they receive. However, people are rarely on the top of the coin because of merit or worth (commonly referred to as the myth of meritocracy [ 35]). Rather, they are there, by definition, because they happen to be able-bodied, settlers, white, straight, cisgender, or other aspects of their social identity that they did not choose, but which nonetheless align with historic planes of domination and subordination [ 13].

Just as the disadvantage received by people on the bottom of the coin is unearned and unfair, so too, the advantage received by people on the top of the coin is unearned and unfair. However, these opposite effects of the coin are not evenly understood.

The contradiction of who holds expertise vs who holds power regarding systems of inequality

The unfair disadvantage associated with the bottom of the coin is frequently in plain view - to clinicians and researchers working to address these challenges, and especially to people on the bottom of the coin themselves who may confront these disadvantages daily. Regardless of whether people on the bottom of the coin are fluent in the language of anti-oppression, they typically are expert in the many ways that the coin operates to create disadvantage, dehumanization, lack of safety and social exclusion. Moreover, it is these groups who have historically led movements to dismantle the coins, such as Indigenous Peoples leading movements to redress the harmful effects of colonization on First Peoples and the environment, or Black people leading anti-racism civil rights movements.

However, the unearned advantage associated with being on the top of the coin is often invisible - in health promotion interventions, in health equity research, and especially to the people themselves who occupy positions on the top of coins. Some have argued that the obliviousness of people about their positions of privilege is a key strategy required to sustain the hegemony of systems of inequality [ 36]. Learning to see the gorilla is a strategy for becoming less oblivious and less harmful.

Lack of awareness about the top of the coin has serious implications for meaningfully addressing health equity. This is because lack of recognition of the societal influences that have helped elevate people on the top of coins to reach their professional, economic or social positions commonly leads those same people to presume that they are there exclusively because of their individual merit. Put another way, where privilege is unchecked, it can lead to an irrational sense of entitlement, expertise and access. It then seems logical and, indeed, a moral imperative for those on the top of the coin to be guided by an altruistic urge to save or fix people on the bottom of the coin. However, this logic no longer holds when one considers who possesses expertise regarding the coin and its effects; that is, people on the bottom of coins.

Furthermore, invisibilizing the top of the coin allows people in positions of privilege to view themselves as unconnected to, or outside of, the systems of inequality they are trying to address, as opposed to understanding their direct relationship to people on the bottom of the coin. Instead of understanding their complicity within systems of inequality, disappearing the top of the coin allows people on the top to frame their role in health equity work as neutral, selfless and altruistic. This positioning logically leads to action that (exclusively) assists people on the bottom of the coin as opposed to targeting oppressive systems that are bad for all.

Within the health sphere, the people who typically hold the power to allocate resources, design programs, and draft policy to address the needs of people on the bottom of the coin often find themselves on the top of multiple coins. But who are the real experts in understanding how the coin operates in society? When people in privilege do not realize the powerful implications of that position, they may unwittingly - and with the best of intentions - devote themselves to trying to help people on the bottom without ever understanding: (1) the impact of the coin on their own individual position, (2) how this lack of understanding vastly compromises their insight about the oppressive social structure, and (3) how this lack of insight can lead to actions that serve not to dismantle the coin, but to strengthen the status quo. For instance, the assumed expertise of people on the top of the coin to solve the problems of inequity becomes reinforced, while the assumed neediness and lack of expertise of people on the bottom of coins is further entrenched. Materials resources (e.g., salaries, grant funding) to address health equity commonly flow to people on the top of the coin to design and administer programs for people on the bottom of the coin, thus reinforcing inequities.

In summary, lack of awareness about one's position on the top of coins is dangerous for health equity. Indeed, the invisibility of privilege is central to the functioning and sustainability of the system of inequality. Invisiblilizing the top of the coin, and frequently the coin itself, ensures that the coin remains strong. This is the gorilla, and why movement toward dismantling systems of inequality requires everyone, and especially people on the top of coins, to learn how to see the gorilla.

Recognizing the intersecting nature of multiple coins

A single coin does not represent all privilege or all oppression. Rather, each coin represents a specific system of inequality (e.g., sexism, racism, ableism). Each person typically occupies the position on the top of some coins and the bottom of other coins at the same time. A common pattern is for people to have a well-developed understanding of the system of inequality for which they find themselves on the bottom and, perhaps, frustration, anger or sadness that this unjust system is not better understood by people on the top of that same coin. This insight can be helpful for then considering one's (often limited) knowledge about the systems of inequality where they find themselves on the top.

Furthermore, it is important to recognize that while each coin represents a different system of inequality, the coins do not operate in isolation. Rather, the coins intersect to create complex inter-relating systems of inequality (see Fig. 2). The result is not additive; finding oneself on the same side of two coins does not mean that one is twice as privileged or twice as oppressed. Rather, intersecting systems of inequality produce new and complex patterns of advantage and disadvantage. The relevance and impact of these positions varies according to context, and so one's positions on these multiple coins need to be analyzed together. The term, intersectionality, was introduced by legal scholar and critical race theorist, Kimberlé Crenshaw, and further understood as the matrix of domination by Black feminist scholar, Patricia Hill Collins, in order to characterize the unique forms of oppression faced by women who are Black [ 37, 38]. Intersectionality has been taken up widely, including within the health sphere [ 39, 40].

The intersecting nature of the coins, which produces complex patterns of advantage and disadvantage

Analysis requires the precision of clarifying one's position on the top or bottom of each particular coin, with special attention to those coins for which one is on top, and how these individual positions may amplify each other in different contexts. Importantly, not all coins are the same size; that is, different systems of inequality will matter more or less in different contexts, and depending on their intersection with other patterns of inequality.

Another key insight offered by an intersectional analysis is how experiences of oppression in one system of inequality do not negate positions of privilege in others. For instance, a white person who is poor may clearly understand the oppressive effects of classism, but may not also appreciate the ways they simultaneously benefit from being on the top of the coin of racism. A racialized person who is considered able-bodied may understand the devastating effects of racism while being unaware of how their ableist privilege serves to regularly give them unearned advantage. An intersectional analysis reminds us that the effects of these different positions cannot be understood through a mathematical approach whereby the position on the bottom of one coin cancels out the position on the top of another. This is how even the most articulate activists on certain systems of inequality can unintentionally strengthen other coins where they find themselves on top because of their unrecognized positions of privilege, i.e., their lack of capacity to see that particular gorilla.

This is not about innocence or guilt

Discussions of privilege can lead to faulty assumptions of innocence, and counterproductive attention to guilt. The coin model is premised on an analysis that rejects both of these unhelpful patterns.

Framing people on the top of the coin as oblivious about their unearned privilege does not equate to innocence among those individuals. For the most part, people within the health sphere who are in positions of privilege do not intend to cause harm; however, these coins were created very intentionally by people on the top of the coin. These systems were designed to oppress, and they are sustained, intentionally by some and unintentionally by others, who are on top of the coin. It is not the intent of one's actions that matters but the impact, and the impact of oblivion among people on the top of the coin can be deeply harmful, dehumanizing and violent to people on the bottom of the coin. Indeed, these systems of inequality are harmful to whole societies because they diminish the contributions and talents of people on the bottom of coins through the barriers they face.

Another common narrative is the feeling of guilt among people when considering the unearned benefits they receive because of being on the top of a coin. Feelings of guilt can lead to discomfort, distancing from the issue, denial, or intellectual paralysis. In the context of racism, white academic Robin DiAngelo calls this phenomenon "white fragility" [ 41]. Guilt can become the primary focus of discussion and analysis among people who share positions on the top of a coin. However, the coin model invites analysis of how focusing on guilt serves to strengthen vs dismantle systems of inequality. Guilt leads to feelings of distress among people through reflecting on the unearned advantages and free lifts that make their lives easier. This distress must be understood in contrast to the (often daily) distress, dehumanization, and violence experienced by people on the bottom of the coin. Furthermore, focusing on the guilt born of discovering unearned benefits serves to centre the needs and feelings of people on the top of the coin, which reinforces the coin by crowding out the needs and feelings of people on bottom. In the words of the Black, lesbian poet and philosopher, Audre Lorde:

"Guilt is not a response to anger; it is a response to one's own actions or lack of action. If it leads to change then it can be useful, since it is then no longer guilt but the beginning of knowledge. Yet all too often, guilt is just another name for impotence, for defensiveness destructive of communication; it becomes a device to protect ignorance and the continuation of things the way they are, the ultimate protection for changelessness."[ 42]

If guilt is an unproductive strategy for people on the top of the coin who wish to dismantle inequities, then what might be alternatives? A more productive strategy is to recognize feelings of guilt, and swiftly reframe guilt as responsibility deriving from complicity [ 43]. Embracing responsibility gives rise to action to resist the dominant norms that sustain systems of inequality, which I refer to as practicing critical allyship.

Principles for practicing critical allyship

To work toward dismantling a system of inequality, different orientations are appropriate depending on one's position in relation to that social structure; that is, the side one is on of a particular coin. This article is written for people who find themselves on the top of a coin that they wish to dismantle (i.e., in a position of privilege), and I call this orientation practicing critical allyship.

Within this approach, allyship is not an identity, but an ongoing practice. The focus on critical allyship as a practice aligns with the focus by others on becoming an ally [ 44, 45, 46], or what queer Black author Mia McKenzie describes as "currently acting in solidarity with" to focus on actions in the present [ 47]. This approach learns from the Anti-Oppression Network, which defines allyship as an "active, consistent, and arduous practice of unlearning and re-evaluating in which a person of privilege seeks to operate in solidarity with a marginalized group of people" [ 48].

Practicing critical allyship requires a reorientation from the dominant way of thinking about how people in positions of privilege should address inequities, which assumes that the most ethical and effective way to address health disparities is for people on the top of the coin to use their expertise to help marginalized groups with their problems. "Their problems" are typically framed as caused by the behaviours of individuals or groups, as opposed to the being linked to unearned disadvantage resulting from systems of inequality (i.e., the coin). It follows that appropriate responses involve people on the top of the coin going into communities (locally and overseas) to bring their expertise and solutions to needy individuals. Although often well-intentioned, people on the top of the coin have been socialized to have little understanding of their relationship to social structures, or the contradiction between who holds power versus who holds expertise. This flawed approach strengthens the system of inequality by reinforcing the assumption that people on the top are experts, unconnected to the system of inequality, and that people on the bottom need rescuing. If the goal is to dismantle the systems of inequality that result in health disparities, a reorientation is required whereby people on the top of the coin reorient their motivation from:

This reframing reverses who is presumed to be more expert on dismantling the inequity (i.e., from people on the top of the coin to people on the bottom), and whose thinking and behaviour need to change in order for the inequity to be dismantled (i.e., from people on the bottom of the coin to people on the top). Reframing the problem as the ineffective and unhelpful orientation of people in positions of unearned advantage allows new possibilities for action to come to light. Below I introduce several principles as an entry point for guiding such action, i.e., for practicing critical allyship.

Stop trying to save or fix people on the bottom of the coin

An initial step is to recognize and resist the everyday ways that people on the top of a coin unintentionally strengthen, as opposed to dismantle, the coin; that is, the things we say or do that unwittingly reflect and therefore reproduce the system of inequality. A key step in this practice is to reject the dangerous and misguided urge to save people on the oppression side of the coin, driven by the irrational sense of expertise, entitlement and access [ 49]. Rather, the aim of critical allyship is to operate in solidarity with people on the bottom of the coin. This principle applies to students, researchers or clinicians developing health promotion programs for or conducting research with marginalized communities locally or globally [ 50], without understanding their personal relationship to the systems of inequality that marginalize these communities in the first place [ 51].

This invitation to recognize the harmful effects of a fixing or saving mentality is particularly complex for those involved in clinical care, which is often defined as fixing or saving patients. The challenge is to consider how to meet individual clinical needs without reproducing systems of inequality. How might one deliver health care in a way that resists these systems and rewrites dominant narratives about power? Rehabilitation science researchers Roush and Sharby call on clinicians to consider this paradox for people with disabilities; that is, how to fix impairments while simultaneously celebrating disability as diversity [ 52]. Another approach is cultural safety, developed by Maori nurse, Irihapeti Ramsden, in response to the inability of the mainstream health system to meet the needs of Maori People in Aotearoa/New Zealand [ 53]. Cultural safety requires clinicians to understand their roles within the power differentials inherent in healthcare, including institutional discrimination, and aims to address inequities through both education and systemic change [ 54].

Take active steps to learn about the systems of inequality for which one is in a position of privilege

Practicing critical allyship focuses not on the intent but impact of one's actions, which requires deepened capacity to understand the multifaceted effects (positive and negative) of action or inaction. Thus far, I have emphasized the similarities across systems of inequality; however, the strategies by which each of these systems operate are unique. As such, a crucial step in practicing critical allyship is to actively acknowledge one's positions of privilege and develop understanding of the logics of oppression that sustain and reproduce these inequalities; that is, the ideologies and assumptions that pervade law, policy, norms, attitudes and our everyday actions [ 55, 56].

A starting point for resistance is naming and discussing privilege with others on the top of that coin to diminish oblivion (i.e., to see the gorilla) and collectively build capacity for change. Examples include straight people discussing how they benefit from and reproduce heteronormativity [ 57], able-bodied people considering the unearned advantages they receive from ableism [ 58], white people learning about their role in perpetuating racism [ 41, 59], or settlers exploring settler identity in the context of colonialism [ 60, 61], with careful attention to how these structures simultaneously intersect. Each of these systems requires deep learning and, moreover, unlearning of entrenched assumptions to guide individual and collective action for transformative social change [ 62].

Step back

Systems of inequality centre the presence, voices, needs, feelings, and worldviews of people in positions of privilege. A key step in redressing these power imbalances is for people on the top of the coin to de-centre themselves or to step back. This includes stepping back physically, such as decentring one's privilege by literally making space for people on the oppression side of the coin at a meeting.

There is also transformative potential in stepping back metaphorically. This is the invitation to listen more and speak less. Those in positions of influence can step back to reallocate power to people who have historically been pushed to the margins. This includes making room for - and recognizing as legitimate - the feelings, approaches, and worldviews of people on the bottom of the coin. This requires those on the top of coins to demonstrate humility regarding the assumed rightness of certain ways of doing, communicating, and thinking, and stepping back to make room for alternatives.

This form of stepping back is exemplified by responses to the egregious history of Western-oriented research on Indigenous Peoples. The emergence of Indigenous research methodologies, which are consistent with an Indigenous worldview, recognize the profound violence perpetrated on Indigenous Peoples through the institutions of healthcare and research, and re-imagine research as a transformative process of cultural reclamation that is driven and controlled by Indigenous People [ 63, 64, 65]. This shift calls on non-Indigenous people to step back in terms of the taken-for-granted 'truths' embedded in a Western worldview about research and health. Following centuries of presumed entitlement and access to Indigenous bodies by non-Indigenous people, practicing critical allyship means asking oneself: What is my research to do and, importantly, what is not? [ 66] This reframing invites a shift from studying Indigenous people to studying whiteness, settler identity, and the roles of racism and colonialism in creating health inequities. It also calls for non-Indigenous people to only engage in research with Indigenous Peoples in the spirit of solidarity, which requires a transformative shift among non-Indigenous People who, by definition, find themselves on the top of the coin of settler colonialism [ 46, 67].

The goal of critical allyship is not only to change the behaviour of individuals, but to fundamentally shift the institutional arrangements that keep people up or down. To this end, stepping back involves giving up both symbolic and material power. In many cases, people on the top of the coin have the power to make material changes immediately, such as redirecting a paid speaking invitation to, or choosing to hire, a person on the bottom of the coin. Practicing allyship means looking at the material resources within one's control (personally and professionally) and intentionally finding ways to shift those resources into the pockets of people on the bottom of the coin. This focus on redistribution of material power invites those on the top of coins to reflect critically on how far back one is prepared to step back in order to share the space and comforts accrued through unearned advantages.

Recognize the need for action at the systemic, institutional, interpersonal and internal levels

Interpersonal interactions, in which one uses their power to intervene in moments of discrimination, are important, and often the focus of calls to "be an ally" [ 68]. However, practicing critical allyship requires analysis and change at multiple levels. The "critical" in critical allyship draws explicit attention to systems of power to emphasize that change at the interpersonal level is important but should not eclipse the goal of structural change.

Social structures play out through institutions like science, health care, and education, which are therefore key sites for practicing critical allyship [ 69, 70]. Practicing critical allyship encourages individuals to transform their own institutions [ 71]. For example, this approach invites reflection on how one's academic department, professional body, or hospital may have day-to-day practices that unintentionally reflect and thereby reinforce systems of inequality. This practice requires rejecting the assumption that, for example, sexism or racism are not replicated in one's lab, classroom or clinic, and instead proactively seeking to understand the ways that they are, so that the harmful effects can be mitigated [ 72].

Structures are deeply entrenched throughout society and embodied in its individuals. As such, a further target for analysis and change within critical allyship is the emotional, psychological and spiritual work required to deepen understanding of the intimate connections individuals hold to these systems of inequality. In other words, practicing critical allyship is more than intellectual. For people in positions of privilege, this internal work can be deeply uncomfortable but it rarely leads to lack of safety, which can be a daily threat to members of historically oppressed groups. Furthermore, this internal work is rarely role-modelled within the spheres of science and health; embracing this aspect of practicing critical allyship is therefore particularly important among influential figures within these fields.

Do not use allyship to enhance personal power

Being in a position of privilege offers an iterative cycle of benefit: if one does nothing to dismantle the system offering unearned advantage, one continues to reap these benefits. Ironically, when one recognizes unfairness and strives to address this injustice, it is common for one's personal or professional position to be advanced. Benefits can include approval from people on the bottom of the coin, acclaim for one's expertise, awards for advocacy, praise for courage and selflessness (i.e., the courage to talk about issues that others have to live with daily), being hired for health equity positions, or academic promotion based on achievements in advancing health among marginalized groups.

In some cases, reward for practicing critical allyship is justified, such as publishing peer-reviewed articles or attracting grant funding based on innovative ideas or health-related interventions developed in solidarity with people on the bottom of the coin. Working in solidarity does not preclude the achievement of academic benchmarks, although there is work to be done within promotions processes to recognize the invisible, long-term and often gendered work of trust-earning that underpins equitable partnerships.

A key principle is to recognize and resist the urge to use allyship to advance one's own power. One should not practice allyship to be seen performing the practice of allyship. On the contrary, one should actively resist special recognition for confronting issues that others live with every day.

This principle rejects allyship motivated by altruism, which depends on the work of oppressed groups to praise or affirm the "aspiring ally", and which pursues justice for people on the bottom of the coin [ 26]. Rather, practicing critical allyship seeks justice for all by addressing the systems of inequality that harm everyone [ 73, 74]. A sign of allyship fueled by altruism (vs solidarity) is a defensive response when confronted about one's actions or missteps [ 22]. Practicing critical allyship involves seeing critique as a gift, humbly admitting mistakes, and honouring the critique as a teaching to further uncover one's own entrenched assumptions. Practicing critical allyship "sees illumination of privilege as liberating and consciously uses unearned privilege against itself" [ 45].

Conclusions

The goal of this article is to help people fine-tune their capacity to see the gorilla (i.e., unearned advantage received from unfair systems of inequality) and to offer initial principles for resisting these systems. While these ideas may not yet be mainstream within the health sphere [ 12, 75], insights regarding systems of inequality and anti-oppression are well developed in activist communities [ 76, 77, 78] and in other academic fields [ 8, 9, 10, 11, 79, 80]. For instance, those looking to better understand sexism, heterosexism and cisgenderism can turn to gender studies [ 81, 82]. Those seeking to better understand ableism and ableist privilege can turn to disability studies [ 32, 83]. Those seeking to learn more about racism (including anti-Black racism) and white privilege can turn to the fields of critical race studies, critical ethnic studies, Black studies, and white studies [ 84, 85]. Scholarship on the intersection of racism and sexism is well-developed [ 86], including the seminal work of Crenshaw and Collins on intersectionality [ 37, 38]. Those working in global health can learn from the fields of postcolonialism/anti-colonialism, and feminist postcolonialism in particular, which calls into question the exclusion of non-white, non-Western perspectives within feminism [ 87, 88]. Furthermore, much is to be learned about the Eurocentric orientation of science and health care from the fields of Indigenous studies and Indigenous feminism [ 89, 90]. While these fields may not always centre health and illness as a focus of inquiry, they are crucial because these systems of inequality are such powerful determinants of health.

Limits of and potential for the coin model

While a strength of the coin model is the simplicity of its framework for introducing complex concepts, this simplicity is also a weakness. First is the shortcoming of framing power, a complex phenomenon, in terms of simple binaries. Second, the model risks misrepresenting the intersectional and co-constituting nature of systems of inequality [ 44] by erroneously being construed as a simple stacking of coins. Third is the risk of assuming that all coins are the same size and have the same impact, which is not the intent of this model. For instance, racism and colonization are profoundly powerful in shaping other coins. Others have argued that classism is a system of inequality unlike all others [ 91]; the metaphor of the coin is helpful in reinforcing the primacy of material disparities within all systems of inequality.

A key concern is that the coin model is at risk of delinking history from these systems of inequality; that is, it does not explicitly link people in positions of privilege to their ancestors who intentionally created these systems of inequality. For instance, the coin model does not explicitly require white North Americans of Western European descent to reflect on statements such as, "I live on the traditional lands of Indigenous people that was stolen by my ancestors," or "My wealth of today is also the result of the enslavement of Black people by my ancestors." [ 92] The principles of practicing critical allyship require learning (and unlearning) about systems of inequality, including historic origins, and this important point is not foregrounded as clearly as others by this model.

A further limitation is use of the term 'allyship'. While this term may be new to some in the health sphere, others have critiqued and moved beyond this language [ 93, 94, 95]. Given the audience for this model, the phrase 'practicing critical allyship' was deemed the least worst option, rejecting use of the noun 'ally', and inserting 'critical' to explicitly draw connection to systems of power. More important than the term are the concepts that underpin it, and the action they inform. Some will critique the principles of practicing critical allyship introduced in this article for not going far enough, and those critiques are welcome.

Finally, the coin model seeks to make visible positions of privilege, and offers principles for action for those on top of the coin. Following the tenet of stepping back, the critique rightly follows that this model centres the needs and concerns of people in positions of privilege, which stands to marginalize the oppressed. However, more than centring the needs of people in positions of privilege, this article aims to problematize the unearned advantages received by people in positions of privilege and the dire health impacts of ignoring these injustices. Further, this article is a call to action to recognize one's positions of privilege and the imperative for reorienting one's approach from helping unfortunate people, to working in solidarity on systems of inequality. The principles for practicing critical allyship introduced in this article offer an entry point to this reorientation; however, the practice is neither neat nor easy. Practicing allyship is fraught, messy, ongoing, and laden with missteps [ 46, 67, 96, 97], - but the alternative of reinforcing the status quo is far worse.

In closing

Identifying and transcending widespread, willful oblivion regarding the harms of privilege within the health sphere is a crucial step in the path toward transformative change. As advocated by Freire over four decades ago, systems of oppression ultimately harm those on both sides of the coin (albeit in different ways) [ 73]. We all lose by precluding and compromising the societal contributions of talented and creative people on the bottom of the coin. Working in solidarity across the coin seeks to advance the liberation of those on both the bottom and the top. This requires a shift in orientation in line with this oft-cited quote from Indigenous elder, Lilla Watson: [ 98]

"If you have come here to help me, you are wasting your time. But if you have come because your liberation is bound up with mine, then let us work together."

Availability of data and materials

References

Download references

Acknowledgments

This article was written in Toronto, which is on the territory of the Huron-Wendat, Petun, Seneca, and most recently, the Mississaugas of the Credit. This territory is covered by the Dish with One Spoon Wampum Belt Covenant, an agreement between the Haudenosaunee Confederacy and the Anishnaabe and allied nations to peaceably share and care for the lands and the resources around the Great Lakes. The ideas presented in this article about privilege and oppression are not new; they have been articulated, advanced and argued for decades, largely by people on the bottom of the coin to people on the top of the coin who have not been ready or willing to listen. In this article, I seek to translate these ideas in a new way for a general health audience, and successful uptake of the ideas in this version must be understood as inextricably linked to my position as someone on the top of most coins. My understanding of the ideas in this article has been informed by the experience and expertise of thinkers who inhabit positions on the bottom of coins, and especially by teachings I have received from people who are racialized, disabled, queer and trans. In particular, I acknowledge the powerful ways that my insights have been developed by the following Black and/or Indigenous women: Atik Bird, Tracy Blake, Lisa Boivin, Dionne Falconer, Katie Gasparelli, LLana James, Stephanie Lurch, Dawn Maracle, Renee Masching, MeLisa Moore, Onyenyechukwu Nnorom, Angie Phenix, Sherri Pooyak, Jackie Schleifer Taylor, Meredith Smith and Ciann Wilson. I thank Muriel Mac-Seing, Pulchérie Mukangwije and Mathieu Simard for leading dissemination of the Coin Model in French. I recognize the important contributions of two blinded and two non-blinded reviewers. I thank Sarah Flicker, LLana James and Barbara Radecki for helpful input on drafts of this article. Any shortcomings with this material are my own.

Funding

Stephanie A. Nixon was funded by a Canadian Institutes of Health Research New Investigator Award during an early stage of developing this manuscript. The funder had no role in the design of the study, in collection, analysis, and interpretation of data, or in writing the manuscript.

Author information

Authors and Affiliations

1. Department of Physical Therapy, University of Toronto, 160-500 University Avenue, Toronto, ON, M5G 1V7, Canada

Stephanie A. Nixon

2. Dalla Lana School of Public Health, University of Toronto, 155 College St Room 500, Toronto, ON, M5T 3M7, Canada

Stephanie A. Nixon

Contributions

This manuscript was conceived and written by SAN. The author read and approved the manuscript.

Author's information

Stephanie A. Nixon is a white, straight, cisgender, able-bodied, middle class woman raised in Toronto, Canada, in a family of settler descent.

Corresponding author

Correspondence to Stephanie A. Nixon.

Ethics declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

I have no conflicts of interest to declare.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Reprints and Permissions

About this article

Cite this article

Nixon, S.A. The coin model of privilege and critical allyship: implications for health. BMC Public Health 19, 1637 (2019). https://doi.org/10.1186/s12889-019-7884-9
Download citation

Received:

Accepted:

Published:

DOI: https://doi.org/10.1186/s12889-019-7884-9

Keywords

# data[].attributes.attachment_link.title
The coin model of privilege and critical allyship: implications for health - BMC Public Health

# data[].attributes.attachment_link.description
Health inequities are widespread and persistent, and the root causes are social, political and economic as opposed to exclusively behavioural or genetic. A barrier to transformative change is the tendency to frame these inequities as unfair consequences of social structures that result in disadvantage, without also considering how these same structures give unearned advantage, or privilege, to others.

# data[].attributes.headline
Public health activism in changing times

# data[].attributes.subject
Public health activism in changing times

# data[].attributes.headline
Biology, Bias, or Both? The Contribution of Sex and Gender to the Disparity in Cardiovascular Outcomes Between Women and Men

# data[].attributes.subject
Biology, Bias, or Both? The Contribution of Sex and Gender to the Disparity in Cardiovascular Outcomes Between Women and Men

# data[].attributes.body
to the Disparity in Cardiovascular Outcomes Between Women and Men

# data[].attributes.attachment_link.readable_text
Health workers unity and global healthcare partnership as a group of diverse medics connected ... [+]
getty

Global health is a field that was born out of colonialism and white supremacy. Even today, it is neither diverse nor truly global. Every aspect of global health is dominated by individuals and institutions in high-income countries (HIC). This includes funding, authorship of publications, leadership of agencies, composition of boards, editorial positions, awards, and even participation in conferences. So, if global health has to be reimagined, people that typically hold power and privilege must master the art of allyship, where they see their primary role as allies or accomplices rather than leaders.

Data show that two-thirds of global health agencies are headquartered in just three countries: Switzerland, UK and USA. More than 80% of CEOs and board chairs of global health organizations are nationals of HICs. Leadership across the global health sector is mainly in the hands of older men from HICs. A typical CEO of a global health agency is 3-times more likely to be a male, 4-times more likely to be from a HIC, and 13-times more likely to have been educated in a HIC.

In short, global health is firmly centered on those with power and privilege, and focused on their generosity and saviorism. We see this right now, with Covid-19 vaccine inequity. Rich nations have hoarded vaccines and their trickle-down charity model has ensured a prolonged pandemic.

Given these deeply entrenched power asymmetries, there is a growing call to decolonize the global health and development sectors. This requires a serious analysis of intersectionality and power.

"A critical analysis of colonialism is fundamentally intersectional and must locate its construction, and thus, deconstruction, in the intersection of white supremacy, global anti-Blackness, patriarchy, capitalism, ableism, classism, homo-transphobia, fatphobia, and xenophobia," said Ijeoma Nnodim Opara, a physician and assistant professor at Wayne State University School of Medicine.

Allyship is one way to address these systems of oppression. "I think the most crucial aspect of allyship is the awareness of the power difference between the two parties. I think once this is explicitly discussed, allies can come up with mechanisms that alleviate this difference (to some degree)," said Rafia Zakaria, author of Against White Feminism. In her book, Zakaria writes that meaningful allyship requires people used to privilege to experience de-privileging of their perspectives. Real allies need to cede space or voice or power, she argues.

What can allyship look like in global health? People in HICs can be allies to people in LMICs. White people in global health can be allies to Black, Indigenous and people of color (BIPOC) people. Men in global health can be allies to women. Able-bodied and cis-hetero people can be allies to people with disabilities and LGBTQ+. The list goes on. But what is allyship and how can one practice allyship?
What is allyship?
The Anti-Oppression Network defines allyship as "an active, consistent, and arduous practice of unlearning and re-evaluating, in which a person in a position of privilege and power seeks to operate in solidarity with a marginalized group."

The Anti-Oppression Network expands the above definition by stating:

allyship is not an identity-it is a lifelong process of building relationships based on trust, consistency, and accountability with marginalized individuals and/or groups of people

allyship is not self-defined-our work and our efforts must be recognized by the people we seek to ally ourselves with

"Allyship is not an identity. It is a practice," said Stephanie Nixon, a professor at the University of Toronto. "I find the framing of 'ally' as a noun to be an unhelpful distraction at best, and a powerful technique for further entrenching the status quo at worst," she clarified. Nixon has proposed the Coin Model of Privilege and Critical Allyship, where she calls on everyone working in health to (1) recognize their positions of privilege, and (2) use this understanding to reorient their approach from saving unfortunate people to working in solidarity and collective action on systems of inequality. Her video offers tips for effective allyship.

"I have been using the term co-disruptors more and more. And have been urging people with more social capital due to privilege to at minimum be an upstander (rather than an ally)," said Amy Tan, a Clinical Associate Professor, at the UBC Faculty of Medicine. "An upstander means that a person will use their privilege, actively stand up in the fight against oppression by speaking up against the oppression (while being careful to not speak for the person or groups experiencing oppression)," she added.

"To achieve global health equity, those who are the most burdened must be centered and should lead efforts to develop and implement policy and programmatic solutions," said Oni Blackstock, founder and Executive Director, Health Justice. "Co-conspirators - people with (unearned) privilege and influencewho want to partner in this work -- must step back and ask disproportionately impacted communities how they can support these communities in gaining access to the resources and life-affirming opportunities needed to achieve optimal health and wellbeing," she explained.

"An ally uses their power to disrupt and undermine the systems in which they wield power, accepting that building a more just world requires them to yield power," said Layth Hanbali, freelance researcher focusing on health policy. "Allies must be willing to give up their own seat at the table and work for others with power to do so, rather than adding another seat," he emphasized.
How can white people practice allyship?
White people in global health hold enormous power and privilege and are often leaders of global health agencies and projects. This is true since colonial times.

"White people need to pause, listen and engage in discomfort," said Heather Buesseler, an independent consultant in compassion and equity-centered health systems design. She has penned a letter addressed at white people, on decolonizing global health. "If decolonization is to succeed, White folx cannot be the ones leading it. We need to step back and re-center power and decision-making so Black and Brown people from the Global South are the ones defining the agenda and designing the seating arrangements at the game table," she wrote in her letter.

"In global health, White folx jump in, we make things move, and we start solving problems even before we've adequately understood those problems and before we've built relationships with the people with whom we are working and serving," she explained. "Instead, we need to consciously practice humility to listen, ask, understand, incorporate, and amplify the perspective and ideas of those we serve, who are mostly Black and Brown people in the global South," she elaborated.

"To me, allyship in global health looks like white women and white men in positions of leadership leaning out and giving space for more representative leadership," said Lazenya Weekes-Richemond, a global health professional. "As a black woman in global health, there's an unspoken hierarchy and I'm often on the bottom of the rung with little agency despite having more field and technical experience than many of my white female counterparts. I want to see white women really listening to BIPOC women, valuing the unique perspective they bring, speaking up on their behalf, amplifying their voice and challenging their organizations to actively dismantle the systems of oppression - that for me is true allyship," she explained. Her article "Dear White Women in International Development" offers more insights.

"We will never achieve global health without including the voices of BIPOC communities at decision-making tables. White people must transition from their roles as allies to become co-conspirators who use their privilege to uproot pillars of oppression. It is no longer sufficient to create room for BIPOC people in spaces where they have been historically excluded. However, it is imperative for white people to give up some of their seats for better representation of BIPOC communities and to foster equitable health for all people worldwide," said Birgit Umaigba, Clinical Practice Instructor, Centennial College, Toronto.

"There is a real need to connect lived experiences and local priorities to global agenda-setting and national policy. We must recognize that the global decision making apparatus was not designed for the majority of the world, who I refer to as formerly colonized and enslaved people. The global system is inherently exclusionary which upholds systems of structural violence. It does not meaningfully allow leadership of those with lived experience. It needs to be taken apart and radically reimaginedto center women, brown and Black people, and oppressed people in both the so-called 'Global North' and 'Global South'," said Sarah Hillware, a global health equity leader & advocate.
How can Global North (HIC) people and institutions practice allyship?
Since people and institutions in HICs call the shots in all areas of global health, they have work to do.

"People in HICs must actively disrupt dominant power relations by both relinquishing their own privileges and fighting against them at their institutions and with funders, but, more importantly, forfeiting attractive grants that work towards the credentialing of those who should be paying higher taxes to adequately finance a real change in global health equity," said Irene Torres who works at the Fundacion Octaedro in Ecuador. "At the very least, they must create the mechanisms for, promote and support divergent thinking and practice, based on a genuine participation (as opposed to token, that is, requiring ethical symmetry among all) to scaffold marginalized -or made invisible- people from civil society and communities towards collectively gaining greater control and power over their lives," she added.

"True allyship is for the more powerful to completely stand back and let those who have been forever marginalized from the sector, to take control of their contextual and operational environment," said Themrise Khan, a global development expert in Pakistan. "Allyship isn't about being a friend. Its being aware of your power over others and being willing to give it up," she argued.

"The only way true global health allyship can be meaningful is if all allies are equally invested and contribute towards projects," said C S Pramesh, a global oncology expert at Tata Memorial Hospital in India. "Often, we find north-south relationships skewed towards ideas and thoughts of the global north being imposed on the collaborator(s) from the global south, and these are doomed for failure. For success, involvement and leadership from local collaborators is imperative," he explained.
How can men practice allyship?
Privileged men from elite institutions in the global north wield great power in global health. Thus, men must find ways to lean out, and create space for women and diverse expertise.

"It is critically important that men have skin in the game as we fight together for gender equality," said Shereen Bhan, Acting North America Program and Global Leadership Development Director, WomenLift Health. "We will not achieve true diversity in leadership until we recognize that the success of men and women is bound together. Men can help remove the top hurdles to advancement in women's leadership by pushing policy for improved work/life harmony, by sponsoring women, by helping female colleagues navigate institutional politics, and by working towards a more supportive and inclusive environment. Men gain from the unique skills and lived experiences that women bring to the table," she explained.

"Male leaders in global health, who want to be better allies to women in dismantling structures of power and privilege, can practice six key things: 1) have sincere intent and recognize their own privilege; 2) listen with patience and remember that it's not about them; 3) talk less and act more; 4) advocate and sponsor instead of just giving advice; 5) create and recommend opportunities for leadership growth; and 6) amplify and bring visibility to diverse voices across the intersections of gender, race, class, and citizenship," said Mehr Manzoor, Fulbright Scholar & PhD Candidate, Health Policy and Management, Tulane University.

"A great example of male allyship that comes to mind is from an experience in a previous role I held at a large organization, where I found out I made significantly less than a male colleague with a similar level of experience," said Sarah Hillware. "I had an informal conversation with a white male colleague and he shared how much he made and informed me how much I was eligible to request. I used this information to move to another department and obtain a 20% pay raise," she explained.
How can able people practice allyship?
"Able people must recognize systemic ableism and how it intersects with other forms of marginalization, and how these intersections influence and transform human health, disability, and well-being," said Aparna Nair, Assistant Professor, History of Science, University of Oklahoma-Norman. "We must understand that many disabled people across the world have experienced public health and biomedicine in violent and oppressive ways; and that that history continues to resonate today. So, we must engage meaningfully with (involve them as stakeholders) disabled people's voices, opinions, activism, and advocacy," she emphasized. Her forthcoming book " Fungible Bodies " examines the relationship between disability and colonialism in British India.

"We have an inequality crisis around disability," said Shubha Nagesh, Chapter Development Manager, Asia-Pacific & Middle-East, Women in Global Health. "Recognizing the unique challenges faced by persons with disabilities, there is a need for institutions to build more comprehensive diversity policies and practices that create an inclusive environment for leadership and decision-making. Allyship can shift the narrative for persons with disabilities. It's our differences and our unique experiences that will steer us towards our collective vision of a more fair world," she argued.

How can cis-hetero people practice allyship?

"Allyship that benefits queer people must, foremost, involve a sincere recognition of hetero-cis-normativity as the world's dominant mode of operation, across all social spaces, including global health," said Suntosh Pillay, a clinical psychologist at King Dinuzulu Hospital in Durban, South Africa, and researcher in the African LGBTI+ Human Rights Project. "Allyship must therefore confront and undo these exclusionary assumptions by ensuring that queer people from diverse contexts are always given a space for their voices to be heard. The best forms of allyship involve humility, respect, collaboration, and both emotional and material support for particular causes," he added. He recently co-authored an article on how global health under-represents the experiences of LGBTQ+ people.

"It is important for cis-het allies from global health to recognize that the struggle of LGBTQIA+ folks is political, said Aqsa Shaikh, an associate professor at the Hamdard Institute of Medical Sciences and Research, Delhi. "We need allies to amplify our voices against systematic political, legal and social exclusion. We need allies to support our right to live - identifying as an LGBT person in many countries is punishable with death. Allies need to identify, amplify and support voices of queer persons especially those with multiple marginalizations. Instead of relying on just cis, gay, white men from the Global North, how about listening to queer folks with layers of marginalization, like a Dalit trans woman from India?," she asked.
How can non-Indigenous people practice allyship?
"Indigenous allyship is the ongoing and active process of building, nurturing and maintaining relationships with Indigenous peoples and then supporting them to achieve self-determined priorities," said Lisa Richardson, Associate Dean for Inclusion & Diversity at the University of Toronto Faculty of Medicine. "The concept of self-determination is that Indigenous communities determine goals and priorities-an ally's role is to help in the realization of them. Allies must be accountable to processes that are respectful of Indigenous leadership and ways of knowing, and that uphold Indigenous rights," she added.

"In my perception, allyship is starting to be viewed as a belief system, rather than a way of being," said Pamela Roach, an assistant professor and director of Indigenous health education at the University of Calgary. "We need actionable words that speak more to behaviors, like accomplice, to shift non-Indigenous allies into action rather than just beliefs. It's the action and behaviors that evidence true allyship and can work to create true change within systems that is important," she explained.

"We need more advocates and allies, we need to have the microphones, the seats in panel discussions, in board rooms and to stop being the afterthought or the token inclusion, that is what allyship should look like," said Faye McMillan, an associate professor at UNSW, Sydney, Australia.
Beyond allyship: striving for trust, solidarity and collective liberation
Many of the experts I spoke to felt that allyship may not be sufficient to reform global health. Learning about effective allyship is just the start. But, as Morpheus warned Neo in The Matrix, knowing the path is not the same as walking the path.

Tiffany Jana believes that contemporary allyship remains entirely too personal and self-centered. "You can be an ally and do nearly nothing," she wrote. She encourages us to move along the continuum from allies to accomplices, and to become co-conspirators.

Layth Hanbali concurs. "Instead of 'ally', I am increasingly drawn to terms like 'accomplices' and 'co-conspirators' as they imply an active, disruptive process," he said. He points out that many institutions have recently deployed progressive rhetoric (e.g. statements or events about Black Lives Matter or decolonizing global health) without accompanying action. "Most have done next to nothing to challenge structural racism, give land back, or make reparations for the systems that created these injustices, which are the same systems that create and maintain the influence and wealth of these organizations. Demanding 'accomplices' and 'co-conspirators' may raise the bar to require action beyond discourse," he argued.

"I don't aspire for allyship in my personal interactions, professional activities, and activism," said Monica Mukerjee, aid worker, who has been active in groups like Decolonise MSF and NANSHE. "Instead, I find myself constantly reflecting on demonstrating trust and commitment. Am I embodying values and behaving in ways in my daily life that are trustworthy for people affected by different and more oppressions? Am I taking risks to dismantle inequitable systems proportionate to my own privileges? Am I joining my voice alongside those who have been spurring change before me? Am I ceding space to allow those more historically marginalized than me to have voice and ownership? Am I listening, taking responsibility, and growing when others hold me accountable for my own mistakes, biases, and limitations?" she asked.

"If we focus on getting to solidarity, within and across all groups and intersectional identities, I think that this is where real change can happen," said Amy Tan. "Oppression affects us all, but in different ways and anti-oppression really must be the universal goal," she explained.

Stephanie Nixon agrees. "We need to reorient allyship according to collective liberation - none of us is free until all of us is free," she said. "This means showing up with humility and openness, willing to use the power and safety that comes with the body they're in to act in solidarity and with accountability in collective action toward a more just future where all are free and safe," she explained. Her article includes a quote from Indigenous elder, Lilla Watson, that seems especially relevant to everyone in global health: "If you have come here to help me, you are wasting your time. But if you have come because your liberation is bound up with mine, then let us work together."

# data[].attributes.attachment_link.title
Disrupting Global Health: From Allyship To Collective Liberation

# data[].attributes.attachment_link.description
Every aspect of global health is dominated by individuals and institutions in high-income countries. If global health has to be reimagined, people that typically hold power and privilege must master the art of allyship, where they see their primary role as allies rather than leaders.

# data[].attributes.attachment_link.title
The Science Behind University Belonging: Why is it Crucial

# data[].attributes.attachment_link.description
We talk about a “sense of belonging” for university students a lot. But what does it actually mean? Turns out, there’s a lot of science to back it up.

# data[].attributes.attachment_link.readable_text
Sense of belonging is one of the most significant factors in students' success and retention in higher education (Kuh et al 2010). In terms of exploring sense of belonging, it is important to conceptualise it as a meta-construct, not something that can be empirically directly measured. Robertson et al (2019) found sense of belonging to be a key 'intangible asset' in higher education-something highly valued but hard to quantify. It is subjective, multi-faceted and changes over time.

Research at Imperial College London, detailed in the links below, explores how students feel part of the community, their course, and comfortable in their identity as a student. In addition to being multi-level, belonging is also multi-relational, across academic and professional staff, peers, friends and one's surroundings (Richardson 2018).

Local and contextual research aims to identify how to support students' sense of belonging. This draws on research on student engagement, which identifies that success is responsibility of both students and the institution. Engagement focuses on what students do, which is easier to measure, whilst belonging looks at students' perceptions rather than actual behaviours. This research aligns with Imperial's review of the curriculum (see tools on how tools to include 'sense of belonging' in evaluations of curriculum reform), as this is the primary way students experience their course, and with the pillars of active learning and diversity and inclusion to support belonging. The digital space has also emerged as a primary vehicle for bringing communities together.

On-going research at Imperial investigates students' sense of belonging in specific contexts, across student groups, and how an environment of excellence and inclusion is nurtured and supported. A number of projects explore students' identity, a key component of belonging. Cross-College research explores how we can measure and track students' sense of belonging to support individual students. Further research draws on learning analytics to see patterns of engagement and belonging on a large-scale, and to link data to understand and support students. Research is on-going in CHERS, in collaboration with departments, professional services and the ICU, in partnership with students through Student Shapers projects and through evaluation of activities and initiatives across the College.

Publications

# data[].attributes.attachment_link.description
Sense of belonging is one of the most significant factors in students' success and retention in higher education (Kuh et al 2010). In terms of...

# data[].attributes.headline
exploring medical students’ sense of belonging

# data[].attributes.subject
exploring medical students’ sense of belonging

# data[].attributes.attachment_link.readable_text
From corners to community: exploring medical students' sense of belonging through co-creation in clinical learning

Abstract

Background

Belonging is critical for the development and wellbeing of medical students. Belonging, particularly within a 'relational being' paradigm, presents a significant challenge for students, especially within clinical learning environments. Co-creation is a learning relationship in which students are actively involved in the education process. It is inherently relational and promotes belonging within higher education environments. Little is known about utilising co-creation in the curriculum, within medical education. The aim of this study was to explore medical students' experience of co-creation of learning resources within the clinical learning environment.

Methods

Following ethical approval, medical students were invited to become co-creators of a learning bulletin resource, within the paediatric acute receiving unit, at a paediatric teaching hospital. Interpretative phenomenological analysis (IPA) was used to enable an in-depth exploration of how medical students experienced co-creation within the clinical learning environment. Medical students participated in semi-structured interviews about their experience, which were transcribed verbatim and analysed using IPA. The analysis integrated individual lived experiences into an analytic summary.

Results

Nine medical students participated. Three group experiential themes were identified: identity maturation; learning community and workplace integration. The support found within this co-created learning community, along with maturation of their identity, allowed the participants to experience a challenge to their existing worldview. This shift in perspective resulted in them responding and behaving in the workplace in new ways, which enabled them to belong as themselves in the clinical learning environment. These findings were situated within the developmental concept of self-authorship, as well as contributing to a new understanding of how co-creation promoted social integration.

Conclusions

Co-creation enabled students to learn in a meaningful way. The relational power of co-creation, can be harnessed to deliver participatory learning experiences, within our increasingly complex healthcare environment, to support the learning, development and integration of doctors of the future.

Similar content being viewed by others

Article Open access

Article Open access

Article Open access

Explore related subjects
Discover the latest articles, news and stories from top researchers in related subjects.

Background

In the melee of modern clinical environments, medical students often struggle to belong [ 1]. The student experience is rotational and transitory, and students are frequently anonymous within clinical teams. Medical students endure more psychological distress than matched peers, which is intensified when entering the clinical learning environment [ 2, 3]. Belonging is a fundamental pre-requisite of human development and wellbeing [ 4]. Educator responsibility to nurture learning environments that promote belonging has amassed increasing attention in the post-pandemic world. Conceptions of belonging incorporate feelings of acceptance, being valued and 'fitting in' [ 5]. A recent alternative paradigm of belonging, referred to as relational being, offers a challenge to the dominant understanding of students belonging to and 'fitting in' with the university [ 6]. Instead, it encourages a relational view of students as, "being within an ecology" which "explicitly values what they bring", as well as their diversity [ 6]. In response, attention to learning structures and processes that promote students' being within this paradigm, is of interest, as a previously unexplored solution.

Co-creation is a close collegiate relationship between students and teachers that welcomes students' perspectives and actively involves them in the teaching and learning process [ 7]. Co-creation gifts a potential solution to students' challenges with belonging in the clinical learning environment because it is inherently relational. Within higher education environments, co-creation enables students to become valued partners, and promotes creativity and critical thinking skills [ 7, 8].

Through a mutualistic symbiotic learning relationship, co-creation aims to enrich teaching and learning, via a social, dialogic and creative process, resulting in something new [ 8, 9]. Co-creation is often situated alongside 'students as partners' and 'student engagement' strategies [ 10]. However, during co-created learning and teaching there is an expectation that students will share responsibility, decision-making and embrace enhanced agency within meaningful relationships with teachers, recently described as 'agentic engagement' [ 11, 12]. In relation to higher education courses that have adopted co-created learning and teaching, students describe the experiences as relationship-enhancing, grounded in trust, and immensely rewarding [ 8]. Meaningful learning is defined as the interaction between existing knowledge and that which is newly acquired [ 13]. Co-creation may introduce students to meaningful participatory learning relationships, with consequential learning benefits as they negoitate between existing and new knowledge.

Co-created learning relationships within higher education benefit students, as a result of them becoming valued partners [ 14, 15, 16, 17]. Key features of co-creation include student empowerment, reciprocity in the learning relationship with teachers and flattening of hierarchy. Within this context, education becomes a shared endeavour of constructing and negotiating understanding with, rather than to, the student [ 8, 18, 19]. Successful co-created learning and teaching experiences are generated by ensuring reciprocal respect and distributed ownership, enabled by explicit communication relating to the intention of the experience [ 20]. Failure to enact these attributes has negative consequences [ 14]. The bidirectional relationship within co-creation is empowering for basic psychological needs, defined by self-determination theory; autonomy, belonging and competence [ 21]. These needs must be met to drive and promote intrinsic motivation [ 21]. Co-creation offers a new space for students to add their value to learning and teaching.

In addition to offering a new form of learning relationship, co-creation also enables new roles. Hence, this becomes an opportunity for transformation, and may inspire critical examination of pervasive norms [ 22, 23]. Re-examination is essential within our increasingly complex modern healthcare environments, and assists in attending to concerns about sustainability of education [ 24]. Co-creating with students promotes critical thinking and creative skills [ 8], which are areas that the educational research community has identified to be of key importance for future research [ 25]. In sum, the values of co-creation enable students to explore new ways of thinking and being, which may help to create learning environments in which students can flourish whilst navigating the complexity of the healthcare setting.

Despite copious evidence of co-creation's benefits within higher education, its relational pedagogy (underpinned by social constructivism), has yet to be fully harnessed within medical education [ 26, 27].

Co-creation can take multiple forms both in and of the curriculum. Co-creation of the curriculum is an activity that informs educational design (e.g., curricular re-design or module re-design), usually prior to learning and teaching taking place. Whereas, co-creation in the curriculum is an activity that creates learning and teaching during a programme or course. For example, students and teachers jointly determining a title and topic for an essay or creating a newsletter together [ 11]. A co-creation typology helps teachers to reflect on what type they are engaging in and communicate this to others [ 11]. Co-creation in medical education has predominantly been situated as a design activity of curricula and modules [ 28, 29, 30, 31]. Little is known about the process of implementing co-creation in the clinical learning environment, as a learning and teaching activity in the curriculum, or about the medical student experience of co-creation in this context [ 11, 32]. Understanding more about how co-created learning and teaching experiences affects medical students during clinical placements might help us to better understand the value of incorporating this pedagogy into medical curricula, in the hope that this could enhance medical student belonging during clinical placements.

Study aim

The aim of this study was to explore medical students' experience of co-creation of learning resources within the clinical environment.

Methods

Ethics

We received ethical approval from the University of Edinburgh Medical Education Ethics Committee - reference number 2022/27. All participants gave written consent for data collection, data analysis and the publication of anonymised results. Participants were able to leave the study at any time without giving a reason.

Study design

This constructivist study used interpretative phenomenology, which is a methodology devoted to understanding how people make sense of experiences within their lives [ 33, 34]. It is committed to detailed inquiry of each case, in its own right, in a particular context, which forms a thorough and systematic analysis [ 35]. The data is considered at multiple levels and stages, within an interpretative ebb and flow, in interaction with the researcher [ 36]. Interpretative phenomenology has particular utility when the topic in question is relatively under-researched and is related to self, identity and meaning-making [ 37].

Inherent in this methodology is the belief that to gain an understanding of the participants' lived experience, rigorous interpretative work is required by the researcher. It requires the researcher to become aware of their pre-conceptions, born of their own experience, to prioritise the participants' being-in-the world. However, there is acceptance that these pre-conceptions cannot be bracketed and hence the researcher takes a dynamic and active role [ 35]. We employed reflexive notes throughout the process, to continuously and cyclically re-examine the interpretation of the data to ensure the participant voice was prioritized throughout the hermeneutic cycle.

Context

We conducted this study in the context of the primary medical degree at the University of Edinburgh in Scotland, United Kingdom. During their penultimate year, medical students undertake five-week long placements within varied clinical areas, including paediatrics. Within the tertiary paediatric hospital in Edinburgh, a monthly learning bulletin in the Acute Receiving Unit is curated by a group of paediatric trainees (residents). This resource includes key contemporaneous and condensed 'learning points', and signposting to further resources. It is shared via email with the entire medical paediatric team, from medical students to consultants (attendings). Paediatric trainees volunteer to be part of the five-member education team collating the learning bulletin resource. Student numbers were approximately matched to that of the paediatric trainees, by hosting two groups, asynchronously in order to provide a balance of voices from each group i.e. five specialist trainees, five students and author VIR. Further details are contained within [Additional File S1].

Participant recruitment

Between November 2022 and January 2023, we used a purposive sampling strategy to recruit a homogenous participant group (in keeping with interpretative phenomenology methodology), all of whom were fifth-year University of Edinburgh medical students. Students were approached by author VIR during an introductory session to their paediatric clinical placement. The entire cohort, of 50 students, was informed about the study and, after having the opportunity to reflect on written information, those who wished to join the team as co-creators indicated their interest. Students were not expected to immediately indicate their interest, but were asked to contact the author via email, if they wished to participate. At the introductory session, the cohort was reassured that not participating in the study was equally acceptable, and were also informed that any co-created learning resources would be shared with the entire cohort.

Data collection

Following their five-week placement, author VIR conducted individual semi-structured interviews regarding participants' experiences of co-creation in the clinical learning environment. Interviews were informed by the interview guide [Additional File S2], but participants were able to talk in detail about their experiences and what was pertinent to them. Participants were encouraged to keep reflective diaries, which were informed by a set of co-created reflective questions [Additional File S3] and some participants referred to these during their interviews. Interviews were audio recorded, transcribed verbatim and data was kept confidential.

Data analysis

We employed interpretative phenomenological analysis (IPA) of the transcribed interview data, following a four-stage process [ 35] [Fig. 1].

Following stage four [Fig. 1], author VIR developed the GETs into an analytic summary which was supported by quotes from each participant. VIR conducted this process with all participants, whilst VRT, SES, and SRH reviewed and audited the themes to ensure that they were grounded in the transcripts and accurately represented an interpretation of the participants' experiences. All authors were involved in data interpretation and analysis.

Four stage process of interpretative phenomenological analysis [ 35]. Table adapted from prose in Interpretative Phenomenological Analysis: Theory, Method and Research (Smith, Flowers, Larkin (2022))

Personal and interpersonal reflexivity

Reflexive processes enabled the authors to be mindful of their worldviews and their influence on the research process. The authors hope that this reflexivity statement will enable the reader to understand how this work may align (or not) with their own beliefs, and hence the utility of the work to them. All team members are educators and researchers, and our prior research regarding identity formation [ 38], social relationships and integration [ 39, 40] are likely to have influenced themes felt to be most pertinent. Author VIR is employed as a medical education fellow by the National Health Service in Lothian (Edinburgh). A part of her job role is to support education within clinical learning environments but she does not hold responsibility for any University of Edinburgh assessment processes. VIR has the personal belief that exclusively hierarchical clinical learning environments hamper students belonging and hence learning experiences. Therefore, she believes she has a responsibility to create learning spaces for all voices to be valued [ 41] Additionally, she believes a competency based primary medical degree encourages enculturation of students and consequentially creates limited space for students' own values and beliefs to be expressed. Furthermore, she believes this stifles creativity, and has a negative impact on wellbeing. Ultimately, she believes in the inherent power of personal and collective learning, which may be unlocked within a co-created learning relationship, and this has been further enhanced by becoming a co-creator of this work.

Results

Nine students agreed to participate. The sample size is normative for IPA, where emphasis is placed on the detailed analysis of each case and not the total case number [ 35, 42]. IPA studies commonly have fewer than 10 participants, in order to enable researchers to undertake the detailed analysis required and uphold the idiographic focus [ 43, 44]. Participants were aged between 21 and 24; six identified as female, two as male and one declined to categorise their gender identity. They had no prior experience of co-creation in the clinical learning environment. Interviews were approximately half an hour in length.

We identified three major themes: identity maturation; learning community; and workplace integration. The major themes, their associated sub-themes, and the relevant interconnections are depicted in Fig. 2.

Themes and sub-themes connected across three spheres; self, co-created learning community and workplace. Interconnections between self (purple), a newly co-created learning community (blue), and the workplace (orange) are depicted within and between three spheres. Identity maturation as a professional, teacher and lifelong learner spanned all three spheres, as illustrated by the arrow moving out from the self sphere into the learning community and workplace. Interdependent learning occurred between individuals in the newly co-created learning community, represented as connecting the self sphere to the learning community sphere. Vicarious learning involved bi-directional interaction between the learning community and workplace and is hence situated between those two spheres. Behavioural congruence and attitudinal shift were found within the workplace, and are represented on the border of the workplace sphere

Identity maturation

Co-creation moulded how students perceived themselves in the world. Maturation was observed across a variety of their identities. Within the group experiential theme of identity maturation, we describe how the students' views of themselves evolved as professionals; as teachers; and as lifelong learners.

Self as a professional

Co-creation acted as a gateway to identifying as a professional. Participants felt that they were not yet professionals, but actively sought opportunities to act in a professional role, and were grateful for the chance to do so:

They were motivated to become co-creators by " trying to get somewhere now." (Student 5) Students felt they hadn't experienced working authentically in a professional team and they were palpably relieved to have this opportunity:

The experience was analogous to working as a doctor, due to the development of the professional skills of negotiation, uncertainty tolerance and critical thinking:

Self as a teacher

Students were able to participate by becoming a teacher of the teachers, which represented a new role within the clinical learning environment. It encouraged deep engagement and was described as a " really good way to enhance your learning even more." (Student 2) They also articulated that becoming a teacher of teachers felt like a courageous act, stepping away from the expected norms of a medical student:

They described the process of embodying the duality of being a learner, as well as a teacher:

"[To know] what people might like to know about or what are interesting things we're learning and what knowledge you'd like to share with other people, thinking about that whilst on placement was a good thing." (Student 4)

Self as a lifelong learner

Students' relationships with medical knowledge were changed by the experience. They moved from seeing knowledge as an entity passed from teacher to learner - a rejection of the knower and the known. Knowledge could now be viewed as, " communal learning, and recognising that everyone's got knowledge that other people don't have or might not have." ( Student 3)

Empathy for doctors, who were now also recognised as situated on the continuum of a learning journey, was developed:

In summary, participants were no longer solely learners. They identified with new and multiple identities of professional, teacher and lifelong learner.

Learning community

Students experienced a new collaborative learning community where they could support, create and learn with each other. Sub-themes included interdependence and vicarious learning.

Interdependence

All participants experienced becoming part of a new collegiate community, which was separate to, but deeply intertwined with, the clinical learning environment. This was an opportunity to connect with others, which contrasted with participants' usual experience of isolated working during placement. This new learning space bolstered and grounded Student 1. This was a shared experience of the group, but Student 1went on to relate it to personal wellbeing:

The group unified around their shared purpose of co-creating the resource and this enhanced social cohesion:

This type of collaboration had previously only been experienced with trusted friends, but co-creation built trust within and beyond the co-creation group:

Participants had an interdependent learning experience which was born from trust and generated collaborative purpose.

Vicarious learning

Students recognised the importance of social learning during the process of creating a new resource together. Enhanced equity of exposure to learning was possible by making visible individual clinical experiences, which were transmitted via the group:

Vicarious learning was a reciprocal process with new insights also taken back out into the clinical learning environment:

"Open conversations" (Student 5) were central to the process of vicarious learning. The conversations created a stimulus for individual reflection:

Via these tools, the group came to find coherence by working through the creative process together:

In summary, a supportive and interdependent learning community was established through multiple interrelated social and creative processes, where students worked out how they could best contribute. A sense of belonging was nurtured, as students felt they mattered, were seen and were respected within a community they were equally responsible for building.

Workplace integration

The support found within the third space learning community, as well as the maturation of their identities, allowed the participants to experience a challenge to their existing worldview. Consequently, integration into the workplace occurred in a new way which was enacted by participants in two ways: behavioural congruence and attitudinal shift.

Behavioural congruence

Student's behaviours found more alignment with their personal values. They felt more able to "speak back and share" (Student 6) with consultants (attendings) and paediatric trainees. There was a growing reciprocity with these staff groups as a result:

Listening more, driven by the responsibility to co-create the learning bulletin, also contributed to this reciprocity:

Speaking up was mediated by the social capital garnered by being part of the co-creation project:

Consultants (attendings) and paediatric trainees could not always be relied upon to support learning processes due to clinical workloads, which left students feeling lost and consequentially unproductive, which was incongruent with their values:

Co-creation changed this feeling of being lost and they took initiative:

Attitudinal shift

Participants' attitudes towards the clinical learning environment became more positive as result of co-creation. This mentality shift resulted in enhanced motivation, driven by increased agency. Medical student positionality and associated value was changed:

Students conceptualised the inclusivity of co-created learning as representative of the values of the workplace:

" It made me feel more positively about the kind of people that I was going to be around signall[ing] to me that it wasn't going to be a horribly hierarchical five weeks" and, "[it] was just a signifier that it was a more open and responsive department." (Student 3)

However, it was perhaps only an adjunct, reinforcing those values, when teams were already inclusive:

Co-creation was also related to the experience of users interacting with the health service:

In summary, the medical students experienced co-creation as a tool to support them to belong as themselves in the workplace. Across all themes, participants felt empowered by new, freeing and useful ways of being, with novel roles and symbiotic ways of connecting with others. Within this theme, participants shared how co-creation explicitly signalled to them the value they could bring, which was interpretated as them developing a sense of relational belonging.

Discussion

This study explored participating medical students' experiences of co-creating a learning bulletin, as an activity involving authentic professional team working. The co-created learning and teaching activity in the curriculum created a platform for a co-created learning community and shaped identity maturation along with new workplace behaviours and attitudes.

Within the self-sphere, students were given an invitation to embody a powerful new identity as a teacher of teachers (providing learning to those who also teach the students). Identity maturation is related to the developmental concept of self-authorship. Self-authorship is "the capacity of an individual to define a coherent internal belief system" and utilise this within relationships, decisions and actions [ 45]. Self-authorship is defined in three dimensions: cognitive, intrapersonal and interpersonal [ 46]. It applies to the co-creation experience because we observed students developing self-authorship in the cognitive dimension (adjustment of their epistemic expectations) [ 47], the intrapersonal dimension (different ways of being a medical student which were congruent with their personal values) and the interpersonal dimension (relationships with peers and staff were constructed and perceived differently). The self-authoring process was a vehicle for them to be empowered to belong as themselves, known as 'relational being' [ 6]. The ability of co-creation experiences to aid self-authorship has been observed in higher education students' co-creation of curriculum [ 48], but has not previously been described in medical students engaged in a short co-creation learning and teaching activity. Becoming self-authored, via a crossroad experience such as this, is important for future healthcare professionals who will be navigating a progressively complex healthcare landscape [ 46].

As newly valued, increasingly self-authored beings, students were able to build social connections within the learning community and workplace spheres. Previous work on social integration divides such connections into bonds (those with shared identities) and bridges (those with different identities) [ 49]. Participants in our study formed bonds within the co-created learning group. As a result, they then formed bridges out into the workplace [ 49, 50]. This new learning network was co-regulatory and vicarious [ 51, 52] in nature and responds to the need to re-examine how we support student connection, which is critical to wellbeing [ 53]. Within this exploration, interconnectivity across the three spheres (self, learning community and workplace), showcased how social integration and belonging intersect. Hence, promotion of a post-humanism view, which considers students within a learning ecology, in contrast to prevailing transactional competitive individualism is encouraged [ 6]. Integration between internal and external influences has been related to professional identity formation via social cognitive theory [ 54]. Co-created bidirectional learning relationships and new networks are waiting to be utilised by medical educators, to encourage all students to integrate, and hence foster a learning ecology where everyone can ' be' and participate meaningfully.

Strengths and limitations

IPA offered a unique opportunity for an in-depth examination of how medical students learn whilst participating in co-creating a learning resource [ 55]. As with other constructivist methodologies, findings may be transferable (to some contexts), but are not generalizable (to all contexts) [ 56, 57]. The use of reflective diaries alongside interviews was beneficial as it encouraged participants to reflect prior to sharing their experiences. VIR was the interviewer, as well as a co-creator, which built relational trust with the participants prior to interview and gave her an 'insider' view. Given this, authors VRT, SES, SRH, who did not have a learning relationship with the participants, were utilised to independently verify the findings. However, the learning relationship with author VIR may have influenced what the participants chose to share about their experience, as they may have wished to express gratitude for their inclusion and VIR's time and effort. This may have resulted in negative facets of their experience remaining undisclosed. Perceptions of existing power relations, in the clinical learning environment may have also been a mediating influence both on student experience, as well as how they felt able to share their experiences.

Further research

It would be beneficial to understand the experience of medical students, within the cohort, who did not participate. Specifically, it would be important to understand whether the results of this study were transferable to non-participating students, who were aware of co-creation occurring in their learning environment. We would be interested to understand what factors determine students' decisions to become co-creators, as well as directing further research towards developing our understanding of how co-creation can be inclusive for all, not just some learners. Furthermore, we are interested to understand whether there was sustained impact on identity maturation, behaviours and attitudes via self-authoring and social integration bond and bridge-building. Co-production of research with medical students is likely to be a powerful tool to develop a more nuanced understanding.

Conclusion

Medical students in this study described experiences of identity maturation as professionals, teachers and as lifelong learners. They also co-created a new learning community, involving internal bonds and bridges out into workplace. This study lends support to the notion that co-creation may have the power to transform medical students' experience of belonging, and may deliver meaningful learning experiences. Medical educators should consider enabling co-creation opportunities within their curricula, to promote students' self-authorship and embodiment of helpful new professional identities.

Data availability

The datasets used and/or analysed during the current study are not publicly available, as participants did not consent to this, but are available from the corresponding author on reasonable request, if additional consent sought and gained from participants.

Abbreviations

IPA:

Interpretative phenomenological analysis

PET:

Personal Experiential Themes

GET:

Group Experiential Themes

References

1. Ryan RM, Deci EL. Self-Determination Theory and the Facilitation of Intrinsic Motivation, Social Development, and Well-Being. American Psychologist. 2000;11.

2. Graham C, Moir Z. Belonging to the university or being in the world: from belonging to relational being. J Univ Teach Learn Pract. 2022;19(4).

3. Lubicz-Nawrocka TM. Exploration of how curriculum co-creation advances student and staff aims for Scottish higher education. [cited 2023 Jun 27]; https://era.ed.ac.uk/handle/1842/37195.

4. Dunne L, Design Thinking. A framework for student engagement? A personal view. Pref J Educ Innov Partnersh Change. 2016;2.

5. Cook-Sather A, Allard S, Marcovici E, Reynolds B. Fostering Agentic Engagement: working toward empowerment and equity through Pedagogical Partnership. Int J Scholarsh Teach Learn. 2021;15(2).

6. Mercer-Mapstone L, Dvorakova SL, Matthews KE, Abbot S, Cheng B, Felten P et al. A Systematic Literature Review of Students as partners in Higher Education. Int J Stud Partn. 2017;1(1).

7. Cook-Sather A, Bovill C, Felten P. Engaging students as partners in learning and teaching: a guide for faculty. 2014. [cited 2023 Aug 18] https://www.researchgate.net/publication/271200592_Engaging_Students_as_Partners_in_Learning_and_Teaching_2_Practical_guidance_for_academic_staff_and_academic_developers.

8. Ryan A, Tilbury D. Flexible Pedagogies: new pedagogical ideas. [cited 2023 Aug 18] https://www.advance-he.ac.uk/knowledge-hub/flexible-pedagogies-new-pedagogical-ideas.

9. Moustakas C. Phenomenological research methods [Internet]. SAGE; 1994.

10. Smith JA, Flowers P, Larkin M. Interpretative Phenomenological Analysis: Theory, Method and Research. London; 2022.

11. Shaw R. Interpretative Phenomenological Analysis in Applied Health Research. SAGE Publications Limited; 2014.

12. Kerins J, Smith S, Tallentire V. Us versus them: a social identity perspective of internal medicine trainees. Perspect Med Educ. 2022;11.

13. Tallentire V, Kerins J, McColgan-Smith S, Power A, Stewart F, Mardon J. Exploring the impact of interprofessional simulation on the professional relationships of trainee pharmacists and medical students: a constructivist interview study. IJOHS [cited 2023 Jul 31]. https://www.ijohs.com/article/doi/https://doi.org/10.54531/byiu8303#.

14. Hockings C. Hearing voices, creating spaces: the craft of the 'artisan teacher' in a mass higher education system. Crit Stud Educ. 2011;52(2):191-205. https://doi.org/10.1080/17508487.2011.572831.

Article Google Scholar

15. Self-authorship theory and medical education. AMEE Guide No. 98 [Internet]. [cited 2023 Jul 31]. https://www.tandfonline.com/doi/full/10.3109/0142159X.2015.1013928.

16. Ndofor-Tah C, Strang A, Phillimore J, Morrice L, Michael L, Wood P et al. Home Office Indicators of Integration framework 2019. [cited 2023 Aug 18). https://www.gov.uk/government/publications/home-office-indicators-of-integration-framework-2019.

17. Smith SE, Tallentire VR. Simulation for social integration. Int J Healthc Simul: 2023. 1-9.

Download references

Acknowledgements

We are grateful for the contribution of participating medical students in this study, who became co-creators. We would sincerely like to thank them. We would also like to acknowledge the paediatric trainees who were co-creators alongside our students. We would like to thank Dr Jay Shetty for his support of this work, via his role as Child Life and Health module organiser for The University of Edinburgh.

Author information

Authors and Affiliations

1. Medical Education Directorate, Medical Education Centre, NHS Lothian, Western General Hospital, Crewe Road South, Edinburgh, EH4 2XU, UK

Valerie Isobel Rae, Samantha Rae Hopkins & Victoria Ruth Tallentire

2. Scottish Centre for Simulation and Clinical Human Factors, Forth Valley Royal Hospital, Larbert, FK5 4WR, UK

Samantha Eve Smith

Contributions

VIR conceptualised and designed the study; acquired, analysed and interpreted data, and wrote the original draft of the manuscript, including preparing Figs. 1 and 2. SRH analysed and interpreted data and substantively revised the manuscript. SES conceptualised and designed the study; analysed and interpreted data, and substantively revised the manuscript. VRT conceptualised and designed the study; analysed and interpreted data, and substantively revised the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Valerie Isobel Rae.

Ethics declarations

Ethics approval and consent to participate

We received ethical approval from the University of Edinburgh Medical Education Ethics Committee- reference number 2022/27. All participants gave written informed consent for data collection, data analysis and the publication of anonymised results.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Reprints and permissions

About this article

Cite this article

Rae, V.I., Smith, S.E., Hopkins, S.R. et al. From corners to community: exploring medical students' sense of belonging through co-creation in clinical learning. BMC Med Educ 24, 474 (2024). https://doi.org/10.1186/s12909-024-05413-2
Download citation

Share this article

Anyone you share the following link with will be able to read this content:

Get shareable link

Provided by the Springer Nature SharedIt content-sharing initiative

Keywords

# data[].attributes.attachment_link.title
From corners to community: exploring medical students' sense of belonging through co-creation in clinical learning - BMC Medical Education

# data[].attributes.attachment_link.description
Background Belonging is critical for the development and wellbeing of medical students. Belonging, particularly within a 'relational being' paradigm, presents a significant challenge for students, especially within clinical learning environments. Co-creation is a learning relationship in which students are actively involved in the education process.

# data[].attributes.attachment_link.description
Towards Equity in Health, hosted by the Institute of Global Health Innovation, with support from the British Red Cross, takes place on Wednesday 18 S…

# data[].attributes.headline
NHS equality, diversity, and inclusion improvement plan

# data[].attributes.subject
NHS equality, diversity, and inclusion improvement plan

# data[].attributes.attachment_link.readable_text
A note on language

In the pursuit of equality, diversity and inclusion, language is powerful and can help to shift attitudes and behaviours.

This plan acknowledges that some definitions and terminology in legislation do not always reflect the identities or lived experience of individuals.

Achieving equality of health outcomes requires identification of barriers and biases, and targeted action to overcome specific inequalities, discrimination and marginalisation experienced by certain groups and individuals.

This includes, but is not limited to, those with protected characteristics under the Equality Act 2010[1].

The aim of this plan is to improve equality, diversity and inclusion, and to enhance the sense of belonging for NHS staff to improve their experience. Therefore, while we refer to the protected characteristics as defined in the Equality Act 2010, the actions set out here are intended to positively impact groups and individuals beyond these terms and definitions.

We have developed the high impact actions in this plan to be intersectional. This recognises that people have complex and multiple identities, and that multiple forms of inequality or disadvantage sometimes combine to create obstacles that cannot be addressed through the lens of a single characteristic in isolation[2].

Some specific points on language

When referring to ethnicity, we use the term Black and minority ethnic (BME) to be consistent with NHS Workforce Race Equality Standard terminology.

We use the term 'disability' as it is defined in the Equality Act 2010 recognising that the Act's intention is both positive and protective for disabled people. However, we recognise that 'disability' is a dynamic term, within which terms such as 'neurodivergence' and 'neurodiversity' are emerging and changing, including the relationship between neurodivergence and definitions of disability.

We use the acronym LGBT+ is used in this document, where the 'plus' includes all those identities and sexual orientations not specifically referenced. To promote the use of inclusive language, this document uses the terms 'trans and non-binary', 'gender identity' and 'sexual orientation'.

Foreword

The NHS must welcome all, with a culture of belonging and trust. ​We must understand, encourage and celebrate ​diversity in all its forms
NHS People Plan 2020

It is our privilege to introduce the NHS's first equality, diversity and inclusion (EDI) improvement plan. The NHS workforce is more diverse today than at any point in its 75-year history, and that brings benefits for patients and taxpayers alike.

Our NHS is built on the values of everyone counts, dignity and respect, compassion, improving lives, working together for patients, and commitment to quality. These values underpin how healthcare is provided, but must also extend to our NHS workforce.

Staff are at the heart of everything the NHS does, and always will be. To support the recovery of services following the COVID-19 pandemic, we need to increase capacity by growing our workforce and find new ways of working to enhance productivity.

To build for the future, we must inspire new staff to join and encourage existing staff to stay.

Ensuring our staff work in an environment where they feel they belong, can safely raise concerns, ask questions and admit mistakes is essential for staff morale - which, in turn, leads to improved patient care and outcomes[3].

This can only be done by treating people equitably and without discrimination.

An inclusive culture improves retention, supporting us to grow our workforce, deliver the improvements to services set out in our Long Term Plan, and reduce the costs of filling staffing gaps.

Delivering that kind of working environment in an organisation of any size takes deliberate focus, listening and action.

The NHS People Plan sets out the priorities for supporting the 1.3 million people who work in the NHS in England[4], with specific actions for improving their sense of 'belonging' in the NHS. Thisplan builds on the People Promise and the People Plan, using the latest data and evidence to identify six high impact actions organisations across the NHS can take to considerably improve equality, diversity and inclusion.

It is also right that NHS England holds itself to account to the same standards as the NHS as a whole, and we will be implementing this plan in our organisation.

We would like to acknowledge the contributions, expertise and lived experience shared with us by staff, staff networks, managers and system leaders in the development of this plan, which have provided us with invaluable insights on improving the experience of staff across the NHS.

We would also like to acknowledge the inputs from our strategic partners, including the Health and Care Women Leaders Network, the Race and Health Observatory, NHS Employers, NHS Providers, NHS Confederation, and many more.

On behalf of the whole NHS leadership team, we want to thank you for working with compassion, putting our patients and people at the helm and rising to the challenges we face.

We hope this plan provides the framework for making the NHS the best place to work whoever you are, where all staff feel they belong, can thrive, and - ultimately - deliver the best possible service for our patients.

Introduction

This improvement plan sets out targeted actions to address the prejudice and discrimination - direct and indirect - that exists through behaviour, policies, practices and cultures against certain groups and individuals across the NHS workforce.

It has been co-produced through engagement with staff networks and senior leaders.

The plan:

Sets out why equality, diversity and inclusion is a key foundation for creating a caring, efficient, productive and safe NHS

Explains the actions required to make the changes that NHS staff and patients expect and deserve, and who is accountable and responsible for their delivery

Describes how NHS England will support implementation

Provides a framework for integrated care boards to produce their own local plans.

The findings and recommendations of the Messenger Review - Leadership for a collaborative and inclusive future (July 2022) reaffirmed the need for this plan's actions, which forms part of our response to recommendation two of the review. Future iterations of this plan will address how we tackle EDI challenges within social care, and will be developed in collaboration with integrated care boards (ICBs) and other key stakeholders including the Department of Health and Social Care (DHSC).

The NHS Long Term Workforce Plan will define the size, shape, mix and number of staff needed to deliver high quality patient care, now and into the future. This EDI improvement plan supports the Long term workforce plan by improving the culture of our workplaces and the experiences of our workforce, to boost staff retention and attract diverse new talent to the NHS. The plan also supports the achievement of strategic EDI outcomes, which are to:

Address discrimination, enabling staff to use the full range of their skills and experience to deliver the best possible patient care

Support the levelling up agenda by improving EDI within the NHS workforce, enhancing the NHS's reputation as a model employer and an anchor institution, and thereby continuing to attract diverse talents to our workforce

Make opportunities for progression equitable, facilitating social mobility in the communities we serve.

These actions should be implemented in partnership with trade unions / staffside colleagues and forums, and in collaboration with staff networks. In line with our operating framework, NHS England will provide guidance to assist trusts and ICBs in adopting an improvement approach to the implementation of this plan, supported by a repository of good practice and a dashboard to enable the measurement of progress. We will also implement this plan internally to ensure consistency with the NHS as a whole.

Where diversity - across the whole workforce - is underpinned by inclusion, staff engagement, retention, innovation and productivity improve. Inclusive environments create psychological safety and release the benefits of diversity - for individuals and teams, and in turn efficient, productive and safe patient care.

Staff survey and workforce data reflecting the lived experience of NHS staff demonstrates that we have more to do before we can say inclusive workplace environments are the norm across the NHS.[5] For example, women make up 77% of the NHS workforce but are under-represented at senior level.[6]. Just over 24% of the workforce are from black and minority ethnic (BME) backgrounds but face discrimination across many aspects of their working lives The 2022 Workforce Race Equality Standard (WRES) data showed that 27.6% of Black and minority ethnic (BME) staff experienced bullying, harassment or abuse from other staff in the preceding year; The NHS Staff Survey along with the Workforce Disability Equality Standard (WDES) shows that disabled staff in the NHS are under-represented when compared to the general population. The NHS staff survey data shows that 25% of disabled staff have experienced bullying from their colleagues, compared to 16.6% of non-disabled staff. Similarly, 23.5% of our LGBT+ colleagues face bullying and harassment at work compared to 17.9% of heterosexual staff.

Organisational efficiency correlates with staff and patient experience: :

Staff who are bullied are less likely and less willing to raise concerns and admit mistakes[7].

Increased leadership diversity correlates with better financial performance.[8]

In hospital settings, managing staff with respect and compassion correlates with improved patient satisfaction, infection control, Care Quality Commission (CQC) ratings and financial performance.[9]

High work pressure, staff perceptions of unequal treatment, and discrimination against staff all correlate adversely with patient satisfaction.[10]

A workforce that is compassionate and inclusive for all has higher levels of engagement, motivation and wellbeing, which results in better care and reduced staff turnover.[11]

Fair treatment of every individual in the workforce helps reduce movement of substantive staff into bank and agency roles to avoid discrimination at work.

A diverse workforce that is representative of the communities it serves is critical to addressing the population health inequalities in those communities.[12]

Organisations with more diverse leadership teams are likely to outperform their less diverse peers.[13]

Psychologically safe work environments, where people feel they are treated with dignity and respect, achieve more effective, safer patient care.[14]

Simply put, a diverse workforce in an inclusive environment will likely improve staff engagement, lower turnover and enhance innovation.

Elective recovery is a top priority for the NHS[15]. Key to our success is boosting capacity, by filling vacancies, reducing turnover and improving morale[16]. To achieve this stability and to lay the foundations from which to grow the workforce of the future, the NHS must improve staff experience across all protected characteristics if we are to sustainably reduce staff turnover, increase recruitment, reduce absenteeism and create more inclusive and productive teams.

High impact actions

This plan prioritises the following six high impact actions to address the widely-known intersectional impacts of discrimination and bias.

High impact action 1

High impact action 1:

Chief executives, chairs and board members must have specific and measurable EDI objectives to which they will be individually and collectively accountable.

Leaders set the tone and culture of their NHS organisation.

Leaders who demonstrate compassion and inclusion, and focus on improvements, are key to creating cultures that value and sustain a diverse workforce. Staff will in turn feel more empowered to deliver great care and patient experience.[17]

As highlighted in the Messenger Review, principles of EDI should be embedded as the personal responsibility of every leader and every member of staff. It is in this context that all chief executives, chairs and board members should have distinct objectives on improving inclusion in their organization and have a personal commitment to mainstream EDI as the responsibility of all, such that the provision of an inclusive and fair culture should become a key metric by which leadership at all levels is judged.

NHS organisations and ICBs must complete the following actions:

Every board and executive team member must have EDI objectives that are specific, measurable, achievable, relevant, and timebound (SMART) and be assessed against these as part of their annual appraisal process (by March 2024).

Board members should demonstrate how organisational data and lived experience have been used to improve culture (by March 2025).

NHS boards must review relevant data to establish EDI areas of concern and prioritise actions. Progress will be tracked and monitored via the Board Assurance Framework (by March 2024).

Success metric for high impact action 1

Further information and case studies can be found in the EDI repository.

High impact action 2

High impact action 2

Embed fair and inclusive recruitment processes and talent management strategies that target under-representation and lack of diversity.

We know diverse boards make better collective decisions for the communities they serve.[18] There has been progress in improving diversity of senior management teams; the total number of BME staff at very senior manager level has increased by 69.7% since 2018 from 201 to 341 [19] and the percentage of board members declaring a disability has increased from 2% in 2019 to 4.6% in 2022. However, in relation to the three protected characteristics for which reliable data exists (race, disability and gender); senior teams across the NHS are less representative of their organisation's workforce. For example, WRES data (31 March 2022) shows that BME people make up 24.2% of the NHS workforce [19] but only 13.2% of board members; 85% of people with a disability do not believe that their trust provides equal opportunities for promotion [20] and women represent 77% of the NHS workforce but only 37% of very senior managers.[21]

Talent management strategies must recognise the importance of equitable recruitment and career progression for all staff. If they do not, the NHS risks losing talent because everyone does not see themselves as having the same opportunity, leading to a direct impact on patient care.

The national 'Inclusive recruitment and promotion practices framework'[22] highlights the principles for an evidence-driven approach. It supports boards in achieving the aspirations of the Long Term Workforce Plan by addressing workforce vacancies.

NHS organisations and ICBs are to complete the following actions:

Create and implement a talent management plan to improve the diversity of executive and senior leadership teams (by June 2024) and evidence progress of implementation (by June 2025)

Implement a plan to widen recruitment opportunities within local communities, aligned to the NHS Long Term Workforce Plan. This should include the creation of career pathways into the NHS such as apprenticeship programmes and graduate management training schemes (by October 2024). Impact should be measured in terms of social mobility across the integrated care system (ICS) footprint.

Success metrics for high impact action 2

Further information and case studies can be found in the EDI repository.

High impact action 3

High impact action 3:

Develop and implement an improvement plan to eliminate pay gaps.

As an inclusive employer, the NHS should take steps to address gender, ethnicity and disability pay gaps.

The gender pay gap in the UK has been declining slowly over time; over the last decade it has fallen by approximately a quarter among full time employees.[23] The pay gap is relatively small for the 88% of NHS staff employed on Agenda for Change (AfC) terms and conditions. However, it is 47% for the 12% of NHS staff who are not, essentially doctors and senior leaders.

The independent review Mend the gap (2020) describes the actions that the NHS should take to address the gender pay gaps in medicine, such as promoting flexible working for all. Many of its recommendations can also be applied to non-medical senior leaders. For example, for every 80 pence earned by Black female doctors their White counterparts earn £1.[24] In younger age groups, the pay gap favours female doctors, reflecting the large numbers of women joining the NHS, but this reverses between the ages of 30 and 34 and then widens with age.[25]

Data on organisational ethnicity and disability pay gaps will become available in the coming years.

NHS organisations are to complete the following actions:

Implement the Mend the Gap review recommendations for medical staff and develop a plan to apply those recommendations to senior non-medical workforce (by March 2024).

Analyse data to understand pay gaps by protected characteristic and put in place an improvement plan. This will be tracked and monitored by NHS boards. Reflecting the maturity of current data sets, plans should be in place for sex and race by 2024, disability by 2025 and other protected characteristics by 2026.

Implement an effective flexible working policy including advertising flexible working options on organisations' recruitment campaigns. (March 2024)

Success metric ​for high impact action 3
Further information and case studies can be found in the EDI repository.

High impact action 4

High impact action 4:

Develop and implement an improvement plan to address health inequalities within the workforce.

In England, 1 in 19 working age adults is employed by the NHS[26], making NHS organisations one of the largest employers within local communities.

This creates an opportunity to positively impact population health by addressing health inequalities in the workforce [27]. A proactive approach to reducing health inequalities in the workplace[28] can make a significant contribution to the levelling up agenda[29] within local communities, supporting targets set by CORE20PLUS5[30].

NHS organisations should start by delivering action in two specific areas.

Firstly, reducing bullying, increasing civility, and having a robust approach to all abuse and harassment. This will address some common causes of ill health, absenteeism and turnover within the workforce which disproportionately impact on those with some protected characteristics, and will improve inclusive team working, staff health and wellbeing.

Secondly, as anchor institutions in local communities, NHS organisations can make a positive impact by offering routes into employment, good work[31] and career development.

Organisations are to complete the following actions:

Line managers and supervisors should have regular effective wellbeing conversations with their teams, using resources such as the national NHS health and wellbeing framework. (by October 2023).

Work in partnership with community organisations, facilitated by ICBs working with NHS organisations and arm's length bodies, such as the NHS Race and Health Observatory. For example, local educational and voluntary sector partners can support social mobility and improve employment opportunities across healthcare (by April 2025).

Success metrics for high impact action 4

During 2024/25, NHS England will work with ICBs and other key stakeholders to establish a mechanism for measuring improvements in workforce health inequalities

Further information and case studies can be found in the EDI repository.
High impact action 5
High impact action 5:

Implement a comprehensive induction, onboarding and development programme for internationally-recruited staff.

Since its inception in 1948, the NHS has benefitted from the expertise, compassion and commitment of internationally recruited healthcare professionals. A warm welcome and comprehensive induction and pastoral support package will make them feel valued from the start and help retain this staff group.

NHS organisations should complete the following actions:

Before they join, ensure international recruits receive clear communication, guidance and support around their conditions of employment ; including clear guidance on latest Home Office immigration policy, conditions for accompanying family members, financial commitment and future career options (by March 2024).

Create comprehensive onboarding programmes for international recruits, drawing on best practice. The effectiveness of the welcome, pastoral support and induction can be measured rom, for example, turnover, staff survey results and cohort feedback (by March 2024).

Line managers and teams who welcome international recruits must maintain their own cultural awareness to create inclusive team cultures that embed psychological safety (by March 2024).

Give international recruits access to the same development opportunities as the wider workforce. Line managers must proactively support their teams, particularly international staff, to access training and development opportunities. They should ensure that personal development plans focus on fulfilling potential and opportunities for career progression (by March 2024).

Success metrics ​for high impact action 5

Reduction in instances of bullying and harassment from team/line manager experienced by (internationally recruited staff).​

NHS Staff Survey

Further information and case studies can be found in the EDI repository.

High impact action 6

High impact action 6:

Create an environment that eliminates the conditions in which bullying, discrimination, harassment and physical violence at work occur.​

Bullying and harassment at work results in increased sickness absence and employee turnover, diminished productivity, sickness presenteeism, governance and employee relations costs. Workplace bullying therefore adversely impacts patient safety.

In the 2022 NHS Staff Survey 18.7% of NHS staff reported they had experienced bullying by colleagues, 11.1% by line managers and 27.8% by patients or their relatives. These statistics are consistently higher for people with some protected characteristics, and particularly those with a disability or and in the LGBT+ community.[32]

Staff who are bullied in the workplace are less likely to speak up and to admit mistakes, and therefore are less likely to contribute to effective team working. Bullying affects bystanders and witnesses too,[33] eroding psychological safety within the workplace culture.[34]

Relying on local policies to prevent bullying or discrimination is not enough. A proactive, preventative approach that seeks early informal intervention wherever possible is more likely to be effective, with escalation only where that fails.

NHS organisations are to complete the following actions:

Review data by protected characteristic on bullying, harassment, discrimination and violence. Reduction targets must be set (by March 2024) and plans implemented to improve staff experience year-on-year.

Review disciplinary and employee relations processes. This may involve obtaining insights on themes and trends from trust solicitors. There should be assurances that all staff who enter into formal processes are treated with compassion, equity and fairness, irrespective of any protected characteristics. Where the data shows inconsistency in approach, immediate steps must be taken to improve this (by March 2024).

Ensure safe and effective policies and processes are in place to support staff affected by domestic abuse and sexual violence (DASV). Support should be available for those who need it, and staff should know how to access it. (By June 2024)

Create an environment where staff feel able to speak up and raise concerns, with steady year-on-year improvements. Boards should review this by protected characteristic and take steps to ensure parity for all staff (by March 2024).

Provide comprehensive psychological support for all individuals who report that they have been a victim of bullying, harassment, discrimination or violence (by March 2024).

Have mechanisms to ensure staff who raise concerns are protected by their organisation.

Success metrics for high impact action 6

Further information and case studies can be found in the EDI repository.

Making change happen

As England's largest employer, the NHS must lead the way in establishing equitable and inclusive workplace environments.

The key change management principle guiding this work is that EDI is everyone's business - our leaders set the tone and culture, but we all have a role to play. Progressing the EDI agenda requires not only a change in systems and processes, but also cultures and behaviours.

NHS leaders, specifically chairs and chief executives, must lead by example and demonstrate that they are committed to creating an EDI environment for their workforce. Board members should collectively and individually decide what support and development they require to confidently lead this complex and challenging agenda.

We expect NHS employing organisations to implement the six high impact actions. They should be confident in explaining to their workforce - especially leaders, HR professionals and line managers - the rationale for this work and what is expected of individuals and teams. Using the repository of good practice, organisations should identify suitable interventions for local implementation, based on local context and conditions. NHS England will support this by collating and disseminating best practice.

Accountability is important for setting clear expectations, coupled with a focus on learning and improvement. NHS England, ICB and provider accountabilities and responsibilities for delivery of the NHS EDI improvement plan follow the principles set out in the NHS Operating Framework and are outlined in the table below. NHS England will provide regulatory accountability and oversight through existing mechanisms, such as the NHS Oversight Framework, and the CQC through the well-led domain of the single assessment framework, which is being refreshed to include a review and assessment of EDI in organisations.

Measurement of progress is critical to guide targeted action. Progress should be measured at organisation and system level to inform delivery, and will be monitored by NHS England to inform the support we provide.

Delivery of high impact actions and interventions by protected characteristic at trust level. ​ Measure progress against success metrics consistently within the organisation.

Engagement with staff and system partners to ensure that actions are embedded within the organisation. ​

Effective system working and delivery to ICS strategies and plans​

Compliance with provider licence, Care Quality Commissions standards and professional regulator standards.

Effective system leadership overseeing NHS delivery of EDI improvement plan, ensuring progress toward achievement of high impact actions and Long-Term Plan priorities.​

Ensuring delivery of ICB statutory functions of arranging health services for its populations and compliance with statutory duties.

Measure progress against success metrics consistently and coordinate a system view.

Compliance with Care Quality Commissions assessment frameworks.

Primary interaction between national and systems​

Translate national policy to fit local circumstances, ensuring local health and workforce inequalities are addressed​

Agree 'local strategic priorities' with individual ICSs and provide oversight and support.

Measure progress against success metrics consistently and coordinate a regional view.

Set expectations for equality and inclusion through the NHS EDI improvement plan ​

With regions, facilitate supportive interventions to implement the high impact actions, improve EDI performance and outcomes​

Measure progress against success metrics consistently and coordinate a national view. ​

Support from NHS England

We will work alongside systems and organisations to support the delivery of the NHS EDI improvement plan.

A national EDI repository

We will create a repository of good practice on the FutureNHS platform to share examples of what is working in the NHS and in other public and private sector organisations. This will help prevent duplication of effort and promote learning. The repository will be continually updated and include:

case studies from organisations

practical toolkits and resources

the latest research and evidence.

A national EDI dashboard

A national dashboard of key EDI metrics is being developed and will be available in the coming weeks by region, within ICBs and within similarly benchmarked trusts. This will enable local organisations and NHS England to monitor progress, identify challenges and assist peer-to-peer learning alongside the EDI repository. It will incorporate relevant education and training metrics, created by Health Education England.

There is currently a range of EDI information datasets and we intend the dashboard to provide one source of information that both organisations and regulators, such as the CQC, can use to track the impact and outcomes of the NHS EDI improvement plan.

In developing the dashboard, we are conscious that there are limitations on the availability of datasets for certain protected characteristics, such as for transgender colleagues. . Furthermore, the declaration rates on the Electronic Staff Record (ESR) for certain characteristics are not a true reflection because the available options, for example, do not reflect that Judaism is a religion and Jewish an ethnic identity. We will continue to work with DHSC and other external stakeholders to harmonise and expand the quality and extent of datasets as we engage with DHSC's Unified Information Standard on Protected Characteristics (UISPC) programme.

We are committed to updating the dashboard with new and refreshed datasets as they become available.

Data

Reliable, consistent and timely data is crucial to effective progress. There are significant differences in the range and quality of data held for the protected characteristics. This is reflected in the sections for each protected characteristic. In 2023/24, NHS England will seek to improve the range and quality of data, working with DHSC and other partners. So, for example, with the addition of a question to the NHS Staff Survey, data is now available on whether staff are internationally trained. In addition, NHS England will seek to develop a new mandated workforce standard on gender identity (gender/sex) and sexual orientation.

Review and evaluation

Sustained improvement is central to this NHS EDI improvement plan. Trusts and ICBs will want to adopt implementation approaches that include learning. NHS England will evaluate progress, particularly on the high impact actions, in years 2 and 5 of the plan, to understand the plan's impact in transforming culture to engender a sense of belonging in the NHS across the workforce, and what does and does not work to inform changes to our approach.

Interventions by protected characteristic

The interventions in the table below address the negative experiences of staff with individual protected characteristics, as defined in the Equality Act 2010. They supplement the intersectional high impact actions and suggest how organisations can go further in specific areas. To inform implementation and prioritisation of their actions, organisations should use robust datasets for each protected characteristic. It is important to note that no person is only one protected characteristic, and so organisations should consider the impact of intersectionality, when implementing these interventions.

The 9 protected characteristics as defined in the Equality Act 2010 are:

1. Age

2. Disability

3. Race

4. Religion or belief

5. Sex

6. Pregnancy and maternity

7. Sexual orientation

8. Gender reassignment

9. Marriage and civil partnership

Engagement with staff networks informed the decision to combine some protected characteristics who face similar challenges in the workforce. To this end, gender reassignment and sexual orientation are covered together. Similarly, pregnancy and maternity are incorporated into the sex protected characteristic. The following section does not include specific interventions on the protected characteristic of marriage and civil partnership because the available evidence does not currently suggest that there is a need for a national focus on this protected characteristic from a workforce perspective, however this will be kept under review.

Case for change

Age

As the largest employer in the country, all NHS organisations should create an age inclusive culture which addresses the needs of staff from pre-employment to post-retirement. Discrimination against both younger and older workers has been identified in the application and selection processes[35]. The NHS has an ageing workforce across all professions with over 41% of NHS staff now aged 45 years and over[36]. We must proactively seek to retain the skills, experience and knowledge of NHS staff close to retirement.

Disability

Successive reports of the Workforce Disability Equality Standard (WDES) and NHS Staff Survey show that more must be done to achieve parity of experience and outcomes for staff with a disability, in areas such as bullying and harassment and formal capability processes.

Race

The 2022 WRES data report for NHS trusts provides evidence that race discrimination continues to impact every aspect of the working lives of BME staff. This discrimination has an impact on the long term physical[17] and mental health[18] of our workforce contributing to structural health inequalities[19].

Religion or belief

Religious identity is an often overlooked area in the NHS.[37] Approximately two-thirds of our 1.3 million people working in the NHS declare a religion or belief. NHS Staff Survey data shows that staff from all faiths experience discrimination based on their religion or belief, and this is highest against Muslim and Jewish colleagues.[38] Recent data highlights increasing levels of antisemitism in wider society, as well as discrimination against Sikhs and other faiths, and this is likely to be reflected among NHS staff.[39]

Sex

77% of the NHS workforce are women, so addressing sex discrimination must be a key focus for organisations. The discrimination is multifaceted - bias in recruitment and career progression and contributing to the gender pay gap, under-representation within senior leadership teams, sexual harassment and inflexible working practices - and may deter potential recruits or force talented women to leave the NHS.[40]

Elimination of the gender pay gap would bring social economic benefits as would likely lower poverty rates among women and reduce the gender gap in old age pensions. Government's Women's Health Strategy for England reports a strong correlation between the lack of support for, and understanding of, how women's health affects their experience in the workplace including progression, retention and productivity levels.

Pregnancy and maternity

There is a growing evidence that the protected characteristic of pregnancy and maternity is associated with poor employment outcomes and health inequalities, and health-related outcomes may be poorer as a result of pregnancy and maternity. Additionally, in a survey of over 6,000 women and employers, over three-quarters of mothers reported negative or possibly discriminatory practices during pregnancy, maternity and/or on their return to work.[41]

Women also experience specific inequalities in relation to the menopause.

It is important to acknowledge that trans, non-binary and intersex staff may also experience inequalities in relation to pregnancy and menopause and may require specific support during these times. The CQC's Maternity Survey reported that trans respondents experienced inequalities, including in to how they were communicated with during labour and birth, their length of hospital stay after giving birth and the information and care they received after leaving hospital.[42][43]

The recommended interventions to address this inequity are similar for colleagues of one or both protected characteristics and have been reflected as such in this document.

Gender reassignment and sexual orientation

LGBT+ staff are more likely to face discrimination from their colleagues and patients,[44] andthis can have a detrimental impact on their health.[45]

The 'plus' within the term LGBT+ acts to include those identities and sexual orientations not specifically referenced. However, we recognise that this group is diverse and their lived experience is varied.

A significant barrier in understanding the experiences of LGBT+ staff is the absence of complete and accurate data. The DHSC Unified Information Standard for Protected Characteristics (UISPC) programme is considering the current data limitation within the ESR with respect to LGBT+ staff declarations. NHS England is working with DHSC and other key stakeholders to expand the workforce data currently available on ESR to make it accurate and representative.

Protected characteristic: Age

Line managers should have meaningful conversations with their teams, to align personal aspirations with job roles and requirements. This should include the option of phasing retirement and exploring alternative work patterns.

Organisations should encourage flexible working as part of local attraction, recruitment, retention and return plans. The plan should embed the NHS Pension Scheme and highlight its value across the career journey, with special focus on flexible retirement for staff in late stage careers.

NHS organisations should work in partnership with local educational institutions and voluntary sector partners to support social mobility by improving recruitment from local communities, and by considering alternative entry routes to the NHS, such as apprenticeships and volunteering.

Protected characteristic: Disability

Demonstrate year-on-year improvement in disability declaration rates so that ESR data is accurate about people with a disability, as measured by the WDES.

all

Promote the visibility of leaders with a disability through effective campaigns alongside providing leadership and career development opportunities tailored to disabled staff, such as the Calibre Leadership programme[46] or Disability Rights UK[47] development programmes. Progress can be measured by tracking the number of disabled staff in leadership roles.

2

Implement recommendations from the inclusive recruitment and promotion practices programme, and ensure each stage of the recruitment pathway is accessible, does not discriminate and encourages people with disabilities to apply for roles in the NHS. This can be tracked via the WDES, using Trac data.

2

Commissioners and providers of talent management and career development programmes must ensure that these are fully accessible and inclusive. Progress can be measured by tracking the number of Disabled people in leadership roles.

2

NHS organisations should take steps to address the disproportionate levels of bullying and harassment experienced by disabled staff. Progress can be measured from NHS Staff Survey results.

6

NHS organisations should ensure that their reasonable adjustments policy is effectively and efficiently implemented and achieves year-on-year improvement in NHS Staff Survey metrics relating to reasonable adjustments at work.

2,4

Protected characteristic: Race

Boards should be able to demonstrate their understanding of and progress towards race equality, an essential criterion in job descriptions for board members and all very senior manager (VSM) grades. Appraisals of senior executives will include a focus on EDI, as recommended by the Messenger Review.

Board will use the EDI dashboard to establish internal data driven accountability and scrutinise progress at an organisational, divisional, departmental, occupation, and site level to address under-representation and pay gaps.

To tackle race discrimination effectively boards must give due consideration to national policies and recommendations from other arms length bodies such as the Equality and Human Rights Commission inquiry[48] and General Medical Council[49]. In addition, boards must proactively raise awareness of their commitment with patients and public.

Boards should ensure concerns raised about race discrimination are dealt with in a proactive, preventative, thorough and timely manner, including encouraging diversity in Freedom to Speak Up Guardians[50].

Protected characteristic: Religion or belief

ESR and qualitative data should be tracked to highlight the experience of people with different faiths or no faith through all stages of the employment journey. For example, NHS organisations can track turnover data by religion to identify and address trends.

all

NHS organisations should review their policies and processes to ensure they are supportive of religious expression in the workplace. This includes access to facilities for prayer, understanding of cultural differences, including religious clothing, and flexibility around religious observances such as the Sabbath and Ramadan.

all

Boards should ensure concerns raised about religious discrimination are dealt with in a proactive, preventative, thorough and timely manner, including by encouraging diversity in Freedom to Speak Up guardians[50].

6

Protected characteristic: Sex and pregnancy and maternity

NHS organisations to focus on closing the gender pay gap and improving the experiences of the lowest paid people, extending the Mend the gap review recommendations for medical workforce to the wider workforce.

2,3

NHS organisations should ensure that their flexible working policy is easily accessible and suitable for all their staff; supporting their work-life balance, management of caring responsibilities, health and wellbeing, and enabling continued professional development.

2

NHS organisations are encouraged to adapt NHS England's policy on menopause awareness as applicable to their local workforce. They should also adopt and implement the Supporting our NHS people through menopause: guidance for line managers and colleagues. This will ensure they fully support colleagues experiencing menopause, maximising their wellbeing and allowing them to work for as long as they wish to contribute.

all

Protected characteristic: Gender reassignment and sexual orientation

Where colleagues feel comfortable, actively encourage LGBT+ staff to self-declare their sexual orientation on ESR and TRAC, emphasising how this can improve the experiences of LGBT+ staff. We recognise that national changes to ESR must be made before trans and non-binary staff are able to do so.

all

Review organisational data for LGBT+ staff across multiple sources such as ESR, TRAC, NHS Staff Survey and local qualitative and quantitative data from LGBT+ staff networks and communities. This will inform the key areas of concern that need to be addressed.

all

Organisations to ensure that diversity training on gender reassignment and sexual orientation is included within mandatory training.

1

Executive teams within the organisations should actively talk about the benefits of allyship as well as champion, and sponsor LGBT+ staff networks. They should also build the concept of allyship into existing and new development programmes.

1

Organisations to ensure that LGBT+ staff are closely involved in the development and delivery of its LGBT+ training and educational interventions and its health & wellbeing programmes so that these are fully inclusive.

all

Conclusion

Our organisations must be more inclusive and our leadership more diverse. We have an obligation to improve the experience of staff so that they feel like they belong. This plan articulates meaningful action to transform the lived experience of our staff and realise the benefits that we know come from greater equality, diversity and inclusion.

There is a wealth of evidence that shows having a diverse workforce and making sure everyone feels part of a team delivers the best care for patients.

It is the job of NHS leaders to ensure we deliver, taking an active role in ending all forms of discrimination, role-modelling inclusive behaviours and creating an environment in which our workforce feel safe and empowered. But everybody has a role to play supporting, encouraging and promoting inclusion.

References

[1] Equality, diversity and inclusion in the Workplace | Factsheets | CIPD

[2] Using intersectionality understand structural inequality Scotland evidence synthesis (www.gov.scot)

[3] West M (2021) Compassionate Leadership: Sustaining Wisdom, Humanity and Presence in Health and Social Care

[4] Hemmings, N et al (2021) Attracting, supporting and retaining a diverse NHS workforce https://www.nuffieldtrust.org.uk/files/2022-10/1636121852-nhs-workforce-diversity-web.pdf https://www.nuffieldtrust.org.uk/files/2022-10/1636121852-nhs-workforce-diversity-web.pdf

[5] Cambridge Dictionary definition for 'lived experience' - the things that someone has experienced themselves, especially when these give the person a knowledge or understanding that people who have only heard about such experiences do not have.

[6] NHS Confederation (2020) Action for Equality: the time is now https://www.nhsconfed.org/system/files/media/Action-for-equality-the-time-is-now_4.pdf

[7] Lucian L Leape , Miles F Shore, Jules L Dienstag, et al (2012) Perspective: a culture of respect, part 1: the nature and causes of disrespectful behavior by physicians. Acad Med. 2012 Jul;87(7):845-52. doi: 10.1097/ACM.0b013e318258338d.

[8] Gomez LE, Bernet P (2019) Diversity improves performance and outcomes. J Natl Med Asso 111(4): 383-392. doi: 10.1016/j.jnma.2019.01.006. Epub 2019 Feb 11. https://pubmed.ncbi.nlm.nih.gov/30765101/

[9] Dixon-Woods M, Baker R, Charles K, et al (2014) Culture and behaviour in the English National health service: overview of lessons from a large multimethod study. BMJ Qual Saf 2014;23:106-15. doi:10.1136/bmjqs-2013-001947 See also West M (2021) Compassionate leadership: sustaining wisdom, humanity and presence in health and social care.

[10] Dawson J (2018) Links between NHS staff experience and patient satisfaction: Analysis of surveys from 2014 and 2015 links-between-nhs-staff-experience-and-patient-satisfaction-1.pdf (england.nhs.uk); see also West M (2021) Compassionate leadership: sustaining wisdom, humanity and presence in health and social care.

[11] West M (2021) Compassionate leadership: sustaining wisdom, humanity and presence in health and social care and King's Fund (2022) What is compassionate leadership.

[12] Public Health England (2021) Addressing health inequalities through collaborative action. Briefing note.

[13] Gomez LE, Bernet P (2019) Diversity improves performance and outcomes[1] J Natl Med Asso 111(4): 383-392. doi: 10.1016/j.jnma.2019.01.006. Epub 2019 Feb

[14] Edmondson A (2018) The fearless organisation: creating psychological safety in the workplace for learning, innovation and growth. Harvard Business School: Whiley

[15] NHS England (September 2022) NHS delivers on elective recovery plan with progress on treatment and tests. https://www.england.nhs.uk/2022/09/nhs-delivers-on-elective-recovery-plan-with-progress-on-treatment-and-tests/

[16] National Audit Office (2022) Managing NHS backlogs and waiting times in England

[17] Ashikali T, Groeneveld S, Kuipers B (2021) The role of inclusive leadership in supporting an inclusive climate in diverse public sector teams. Review of Public Personnel Administration 41(3): 497-519. https://doi.org/10.1177/0734371X19899

[18] NHS Improvement (2018) NHS provider board membership: survey and findings. https://www.england.nhs.uk/1sthi5thew4y/wp-content/uploads/sites/54/2020/08/NHSI_board_membership_2017_survey_findings_Oct2018a_ig.pdf

[19] NHS England " NHS Workforce Race Equality Standard (WRES) 2022 data analysis report for NHS trusts

[20] Statistics " NHS Staff Survey in England

[21] Narrowing of NHS gender divide but men still the majority in senior roles - NDRS (digital.nhs.uk)

[22] NHS Employers (2021), Inclusive recruitment: Leading positive change.

[23] Appleby J, Schlepper L (2019) The gender pay gap in the English NHS. Analysis of some of the underlying causes.

[24] UK Government (2019) NHS basic pay. Ethnicity facts and figures

[25] Mend the Gap: The Independent Review into Gender Pay Gaps in Medicine in England - December 2020 (publishing.service.gov.uk)

[26] See endnote reference 1

[27] Public Health England (2015) Local action on health inequalities: Promoting good quality jobs to reduce health inequalities https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/460700/2a_Promoting_good_quality_jobs-Full.pdf

[28] Ten Ways businesses can help to reduce inequalities. Infographic. NHS England. https://www.england.nhs.uk/wp-content/uploads/2022/01/10-ways-businesses-can-reduce-health-inequalities-infographic-1.pdf

[29] UK Government levelling up the United Kingdom

[30] NHS England " Core20PLUS5 - An approach to reducing health inequalities for children and young people

[31] The CIPD (2019) describes good work as follows: Good work is fairly rewarded. Good work gives people the means to securely make a living. Good work gives opportunities to develop skills and a career and ideally gives a sense of fulfilment. Good work provides a supportive environment with constructive relationships. Accessed 05.12.22: https://www.cipd.co.uk/Images/uk-working-lives-summary-2019-v1_tcm18-58584.pdf

[32] Statistics " NHS Staff Survey in England

[33] Statistics " NHS Staff Survey in England

[34] Edmondson A (2018) The fearless organisation: creating psychological safety in the workplace for learning, innovation and growth. Harvard Business School: Whiley

[35] (2021) Good Recruitment for Older Workers: An Employers Guide. https://ageing-better.org.uk/sites/default/files/2021-10/GROW-a-guide-for-employers.pdf

[36] NHS Digital. NHS Workforce statistics March 2022: https://digital.nhs.uk/data-and-information/publications/statistical/nhs-workforce-statistics/march-2022

[37] Héliot YF (2020). Religious identity and working in the NHS. NHS Employers

[38] King's Fund (2015) Making a difference to diversity and inclusion in the NHS

[39] https://commonslibrary.parliament.uk/research-briefings/cbp-8537/

[40] Government Equalities Office (2019) Gender Equality at Work: Research on the Barriers to Women's Progression

[41] Pregnancy and maternity-related discrimination and disadvantage: summary of findings (publishing.service.gov.uk)

[42] LGBT Foundation - Revealed: Improving Trans and Non-binary Experiences of Maternity Services (ITEMS) report

[43] https://www.cqc.org.uk/publication/surveys/maternity-survey-2022

[44] Statistics " NHS Staff Survey in England

[45] https://www.kingsfund.org.uk/blog/2021/04/supporting-lgbtq-nhs-staff

[46]Details on the Calibre Disabled Leadership Programme as at December 2022: https://www.ossiesway.com
[47] Details on the Disability Rights UK Leadership Programme as at December 2022 https://www.disabilityrightsuk.org/how-we-can-help/leadership

[48] Report finds evidence of inequality in treatment of ethnic minority 'Covid heroes' working in health and social care | Equality and Human Rights Commission (equalityhumanrights.com)

[49] Racism in the workplace - GMC (gmc-uk.org)

[50] Kline R, Somra G (2021) Difference matters: The impact of ethnicity on speaking up (National Guardian Office)

# data[].attributes.attachment_link.title
NHS equality, diversity, and inclusion improvement plan

# data[].attributes.attachment_link.description
In the pursuit of equality, diversity and inclusion, language is powerful and can help to shift attitudes and behaviours. This plan acknowledges that some definitions and terminology in legislation do not always reflect the identities or lived experience of individuals.

# data[].attributes.attachment_link.description
Is ‘decolonisation’ relevant at all to the university situated in Britain and other former colonial centres? Answering broadly in the affirmative, this essay situates the project of ‘decolonising’…

# data[].attributes.headline
"There is no such thing as unconscious bias, it’s just bias"

# data[].attributes.subject
"There is no such thing as unconscious bias, it’s just bias"

# data[].attributes.attachment_link.title
John Amaechi OBE on LinkedIn: There is no such thing as unconscious bias, it’s just bias. | 64 comments

# data[].attributes.attachment_link.description
There is no such thing as unconscious bias, it’s just bias. | 64 comments on LinkedIn

# data[].attributes.attachment_link.title
What is colonialism? | The History of Racism

# data[].attributes.headline
Racism and capitalism - what's the connection?

# data[].attributes.subject
Racism and capitalism - what's the connection?

# data[].attributes.attachment_link.title
The Understory Module 1: Racial Capitalism and Colonialism

# data[].attributes.headline
Where next for understanding race/ethnic inequalities in mental illness?

# data[].attributes.subject
Where next for understanding race/ethnic inequalities in mental illness?

# data[].attributes.body
in severe mental illness?

# data[].attributes.attachment_link.title
Sociology Health   Illness - 2019 - Nazroo - Where next for understanding race ethnic inequalities in severe mental illness

# data[].attributes.headline
GMC targets elimination of disproportionate complaints and training inequalities

# data[].attributes.subject
GMC targets elimination of disproportionate complaints and training inequalities

# data[].attributes.attachment_link.title
Policy briefing on using equality data to understand and tackle race inequalities in maternity and antenatal care | EHRC

# data[].attributes.attachment_link.description
Various investigations and inquiries have made recommendations to reduce race disparities in maternity and neonatal care. This has included calls for health bodies to collect and use better information on the ethnicity of pregnant women and their babies. It has also included calls for health bodies to collect and use better information on pregnant women’s language needs.

# data[].attributes.headline
BJGP - MBRRACE 2021: preventing maternal deaths — we are all part of the solution

# data[].attributes.subject
BJGP - MBRRACE 2021: preventing maternal deaths — we are all part of the solution

# data[].attributes.attachment_link.title
MBRRACE 2021: preventing maternal deaths — we are all part of the solution

# data[].attributes.attachment_link.description
The Confidential Enquiry into Maternal Deaths in the UK started in 1952, aiming to identify the improvements in care provided to pregnant and postnatal women to reduce maternal morbidity and mortality. Since 2012, the Confidential Enquiry into Maternal Deaths in the UK has been based at the National Perinatal Epidemiology Unit, Oxford. Each year the report provides surveillance data from a triennium and confidential enquiries into specific topics. GPs have been involved for >15 years and currently a team of sevenGP assessors are involved in case review. The 2021 report covers surveillance data on the deaths of women, during pregnancy or up to 1 year after pregnancy, between 2017 and 2019.1 This confidential enquiry covers the topics of morbidity of older mothers, mental health and multiple adversity, malignancy, and venous thromboembolism. A maternal death is a death occurring during pregnancy or up to 42 days after the end of a pregnancy. A ‘late’ maternal death is one occurring from 42 days to 1 year after delivery. Between 2017 and 2019, 191 women died, a maternal death rate of 8.79 per 100 000 maternities.1 There was no statistically significant decline in maternal deaths compared to 2010–2012. In 2017, the Health and Social Care committee set the aim of reducing maternal mortality by 50% between 2010 and 2025.1 Progress towards this goal is currently inadequate.2 Cardiac disease is the leading cause of maternal death in the UK, with neurological causes close behind. The highest rates of death are seen in particular ethnic groups, women aged ≥40 or <20 years, or related to socioeconomic deprivation. Black women are four times more likely, and Asian women almost two times more likely, to die than White women.1 The cause of this disparity is unclear, and with this in mind the …

# data[].attributes.headline
BMA: Delivering racial equality in medicine

# data[].attributes.subject
BMA: Delivering racial equality in medicine

# data[].attributes.attachment_link.provider_name
The British Medical Association is the trade union and professional body for doctors in the UK.

# data[].attributes.attachment_link.readable_text
Racism in medicine Details evidence of the racism experienced by doctors and medical students working in the NHS, and the impact of these experiences on their working lives and their career opportunities.

# data[].attributes.attachment_link.description
Our report examines the causes and current extent of race inequality in the health service and medical profession, and makes recommendations on how this must be addressed.

# data[].attributes.headline
Gender Identity For Beginners - A Pocket Guide For Trans Allies

# data[].attributes.subject
Gender Identity For Beginners - A Pocket Guide For Trans Allies

# data[].attributes.attachment_link.authors[].name
Centers for Disease Control and Prevention (CDC)

# data[].attributes.attachment_link.title
Introduction to Racial Capitalism - Alana Lentin

# data[].attributes.attachment_link.description
Lecture given to the ICS Key Thinkers and Concepts Series. I have included both the recording of the lecture on Zoom (which is in two parts) and the text and slides below that. The text and accompanying slides of the lecture follow: Universities are built on sovereign Aboriginal lands. Western…

# data[].attributes.attachment_link.description
Is ‘decolonisation’ relevant at all to the university situated in Britain and other former colonial centres? Answering broadly in the affirmative, this essay situates the project of ‘decolonising’…

# data[].attributes.headline
Material Insecurity, Racial Capitalism, and Public Health

# data[].attributes.subject
Material Insecurity, Racial Capitalism, and Public Health

# data[].attributes.attachment_link.readable_text
Abstract

In the influential 1995 article "Social Conditions as Fundamental Causes of Disease," Bruce Link and Jo Phelan described social and political factors as "fundamental causes" of death and disease. Whitney Pirtle has recently declared racial capitalism another such fundamental cause. Using the case of the water crisis in Flint, Michigan, she has argued that racial capitalism's role in that situation meets each of the criteria Link and Phelan's article outlines: racial capitalism influenced multiple disease outcomes, affected disease outcomes through multiple risk factors, involved access to flexible resources that can be used to minimize both risks and the consequences of disease, and was reproduced over time through the continual replacement of intervening mechanisms. We argue for Pirtle's conclusion using the extensive literature on racial capitalism and case studies concerning housing in the United States and Brazil and what Naomi Klein has termed "corona capitalism" in India. If races correspond to hierarchies of material security, as suggested by Ruth Wilson Gilmore, then these hierarchies and their causal effects are fundamental determinants of public health.

Keywords: racial capitalism, race, class, racism, casteism, material insecurity, fundamental cause theory, bioethics, public health, corona capitalism, Covid‐19

Essays

In the oft‐cited 1995 article "Social Conditions as Fundamental Causes of Disease," Bruce Link and Jo Phelan describe social and political factors as "fundamental causes" of death and disease. Part of the inspiration for the authors' claim was the intractability of poor health outcomes in impoverished communities, even of particular diseases. "[E]ven if one effectively modifies intervening mechanisms or eradicates some diseases," the authors argue, "an association between a fundamental cause and disease will re‐emerge. ... [F]undamental causes can defy efforts to eliminate their effects when attempts to do so focus solely on the mechanisms that happen to link them to disease in a particular situation." ¹

Link and Phelan's analysis presents an important question: how to diagnose the social conditions themselves. Recently, sociologist Whitney Pirtle suggested a provocative answer when she asserted that racial capitalism should be considered a "fundamental cause" of death and disease. ² Using the case of the water crisis in Flint, Michigan, she has argued that racial capitalism's role in the crisis there meets each of the criteria Link and Phelan's article outlines: racial capitalism influenced multiple disease outcomes, affected disease outcomes through multiple risk factors, involved access to flexible resources that can be used to minimize both risks and the consequences of disease, and was reproduced over time through the continual replacement of intervening mechanisms. In this essay, we will argue for Pirtle's conclusion by supplementing it with tools identified by Arlene Bierman and James Dunn.

Bierman and Dunn provocatively claim that "social class dwarfs healthcare as a determinant of health." Bierman and Dunn take it that class is linked to health outcomes through its influence on populations' abilities to reliably access "basic necessities": housing and food. Poverty is the "leading cause of avoidable mortality" in part because of the "forced choice" that impoverishment presents to low‐income people: whether to pay rent, buy food, or seek medical care. ³ No matter how a person in this predicament chooses, something will go missing, undersupplied, or come by erratically, which will become a vector for negative health outcomes.

But decades of social science have also linked race with these same outcomes. Moreover, authors in the literature on racial capitalism tie race and class together with the broader system of capitalism that determines how income, wealth, and social advantages are produced and distributed. Racial capitalism's effects on public health can thus be understood as a fundamental cause of health outcomes using the same approach that Bierman and Dunn used to link health outcomes to class. For public health research, what is key is perhaps less whether we use the terms "race" or "class" but the system of hierarchies that both these terms help to categorize: different strata of material security and insecurity, or the degree of security with respect to "basic necessities."

Racial Capitalism

The term "racial capitalism" is used by people expressing a set of intellectual positions about our global social structure that developed over the twentieth century. The sociologist Oliver C. Cox developed some of the key building blocks of what became racial capitalism theory in Class, Caste, and Race (1948) and The Foundations of Capitalism (1959). He concluded that "racial antagonism ... developed within the capitalist system as one of its fundamental traits" and, furthermore, that "racial feeling developed concomitantly with the development of our modern social system." ⁴ The term "racial capitalism" originates from African theorists like Neville Alexander and Harold Wolpe, and it was popularized in the United States by theorists including Cedric Robinson. ⁵

Vulnerability to premature death comes, of course, in many forms: at least as many forms as there are ways to die prematurely. But here it is instructive to recall Bierman and Dunn's reasoning for classifying social class as a prime driver of health outcomes. First, they point out the what: that poverty is the "leading cause of avoidable mortality." ⁸ Second, they point out the why: that impoverishment presents low‐income people with a "forced choice" between paying rent, buying food, or seeking medical care, thus ensuring that something essential will be shortchanged. It is not poverty in and of itself, then, that causes death but what poverty reliably does: it causes insecurities or precarities that have an understood and deleterious effect on health outcomes. Race, theorists of racial capitalism point out, has this same effect on populations.

Food insecurity is an important determinant of public health. Undernutrition, particularly of children, is a primary cause of ill health and premature mortality in the Global South. ⁹ Famines represent an extreme case of food insecurity. Groundbreaking work by philosopher and economist Amartya Sen highlighted a surprising fact about this extreme case that is politically informative about the structure of our society: famines often are unrelated to food availability.

This point is counterintuitive. Before Sen wrote, the traditional approach to explaining famines appealed to food scarcity: famine involves starvation, and starvation is lack of food. This "food availability approach" was assumed in classic works of economics and philosophy (most famously by Thomas Malthus). If you wanted to explain a famine, you appealed to activity in or of the natural world that would interact with the food supply: pests, droughts, heat waves. ¹⁰

In "Famines," Sen appeals to two cases. The first is a famine in Ireland following a potato crop failure in 1822. There, people starved to death even though there was plenty of corn to eat. The second concerns the Bengal famine of 1943, in which three million people starved to death even though food production had actually increased relative to 1941, when there was no famine at all. The food availability approach does not offer a satisfying explanation to these famines. In both cases, Sen argues, the failures were sociopolitical: the reluctance of the British Empire to defend its colonized subjects rather than particular elites' financial interests. ¹¹

The reason that people starved in Bengal and Ireland is explicable in terms of the framework offered by racial capitalism, especially as explained by Robinson and Gilmore. Robinson notes that the social structure enabled by splitting the ruled into separate populations arranged into a sharp, vertically organized hierarchy was developed in Europe (to the disadvantage of groups like the Irish and the Slavs) and came to operate on a world scale (incorporating Africans and Indigenous peoples) because of European colonization and subsequent capitalism. ¹² These distinctions in hierarchy, Gilmore's definition tells us, become differences in group‐level vulnerability, with groups further down the racial hierarchy systematically experiencing more vulnerability than groups farther up. This stratification is exploitable by the political powers that be: in Ireland, to defend profits and colonial control by largely English elites (higher up the racial hierarchy than the Irish) and, in Bengal, to defend the strategic interests of the British military (which feared Japanese invasion in rural Bengal).

Whether one relies on the globally scoping ecologically unequal exchange theory, the transnational pollution haven hypothesis, or the idea of subnational green crime havens, the balance of evidence suggests that the geographical distribution of pollutants and environmental risk reflects social power dynamics. Moreover, the evidence suggests that the relationship between the political power of a population and its susceptibility to environmental vulnerability is a causal one, not simply a set of unhappy coincidences. This fits squarely into Gilmore's definition of racism: "the state‐sanctioned or extralegal production and exploitation of group‐differentiated vulnerability to premature death." Racial capitalism, then, links racial power and security disparities themselves to environmental exposures and health outcomes.

Housing

Racial capitalism also explains stable, long‐term, structural stratifications in housing. Consider the examples of the United States and Brazil.

In the United States, a variety of systems secure the investments of landlords by shifting the financial and social risks of housing toward the most vulnerable residents. ¹⁹ Working‐class and affluent renters pay similar amounts of rent but live in housing of vastly different levels of quality because working‐class renters are often confined to dilapidated housing stock. ²⁰ Low‐income renters are identified via complex surveillance systems that function much like a criminal record: appearances in housing court, credit problems, and run‐ins with the law can all mar a low‐income tenant's record and prevent them from accessing safe housing. ²¹ Racial stratifications show up in the same pattern: Black renters are disproportionately targeted for eviction, by predatory lending, and by the police, all circumstances that serve to increase these renters' vulnerability to housing insecurity. ²²

Urban informal settlements are characterized by a combination of concentrated poverty, insecure and poor‐quality housing, political disenfranchisement, and a lack of access to essential life‐supporting services such as clean water, sanitation, and health care. In Rio de Janeiro, Brazil's second largest city, 1.39 million people (22 percent of the total population) live in informal settlements. ²³

Morro da Providência, Brazil's oldest favela, was first settled by veterans of the War of Canudos in 1897. Following the war, soldiers settled on the morro ("hill"), and later, opportunities for unskilled laborers also attracted formerly enslaved people (who had been freed in 1888). At this time, the government had given little thought or support to how newly liberated people would survive; hundreds of thousands of formerly enslaved people came to Rio seeking employment provided by Rio's wealthy families. In Morro da Providência, these newly freed people had nowhere to live, but they had access to free land in the morros.

Many of these dynamics are still in place in Morro da Providência. The population is largely Black and mixed race; by contrast, Rio's wealthy southern zone is 80 percent White. ²⁴ Land in Rio is incredibly valuable, and proximity to the capital city is a necessity for many who rely on the opportunities there for survival. While the government of Brazil has worked with favelas to improve infrastructure and expand access to sanitation, residents of Morro da Providência live in a state of constant precarity given Brazil's history of policies that result in the displacement and destruction of these informal settlements.

India's "Corona Capitalism"

Racial capitalism does not apply only to long‐term, structural phenomena like housing and ecological exchange. As we saw in Sen's example of famines, it also applies to short‐run crises of material insecurity. In this final section, we consider another short‐run example: the ramifications of stratification under racial capitalism in the crisis of the Covid‐19 pandemic.

India's pandemic response has demonstrated the symbiotic relationship between racial capitalism and disaster capitalism, described by Naomi Klein in her 2007 book, The Shock Doctrine, as a framework wherein governments exploit crises to push through (often unpopular) neoliberal policies for the benefit of a small group of wealthy elites at the expense of the poor. ²⁵ Klein has described the current manifestations of this strategy as "corona capitalism." Klein notes, "This crisis-like earlier ones-could well be the catalyst to shower aid on the wealthiest interests in society, including those most responsible for our current vulnerabilities, while offering next to nothing to most workers, wiping out small family savings and shuttering small businesses." ²⁶

During the Covid‐19 pandemic, the Indian government instituted what was the world's largest and among its most restrictive lockdowns, leading to an exodus of migrant workers at a scale reminiscent of the 1947 partition of India and rendering millions of lower‐caste workers homeless and unemployed overnight. ²⁷ Dalits and Adivasis made up most of the informal and daily wage laborers forced to leave cities due to loss of livelihoods, exacerbating existing inequalities along caste lines. ²⁸ From December 2019 to April 2020, the proportion of employed members of the upper castes decreased by 7 percent, compared to a drop of 20 percent among members of Scheduled Castes (Dalits) and 15 percent among members of Scheduled Tribes (Adivasis). ²⁹ Because the majority of Dalits and Adivasis are landless, the lockdown worsened their already‐precarious living conditions and left many stranded in cities with no work, nowhere to stay, and no way to leave. ³⁰ As a result, they shouldered an undue burden of the ensuing housing and food insecurity crises in addition to increased exposure risk amidst a pandemic. In India during the pandemic, as in Bengal during the famine, food insecurity has been characterized not by resource scarcity but by a failure of distribution schemes: more than 65 lakh tonnes of grain (equivalent to 6,500,000 metric tons) were left to rot over four months while people at the bottom (and outside) of the caste hierarchy went hungry. ³¹ On May 26, 2020, after nine weeks of complete lockdown, the Supreme Court admitted "inadequacies and certain lapses" on the part of central and state governments and ordered them to provide food, shelter, and transport to stranded migrant workers. ³²

As the lockdown lifted and workers returned, several Indian states moved to suspend labor laws, such as eliminating requirements for a minimum wage and removing health and safety protections, while also limiting employer liability for injuries and illnesses caused on the job. ³³ In tandem, the government pushed through three new farm laws to deregulate the agricultural industry by excluding a mandate for a minimum support price (MSP), weakening land ownership rights, and removing products from the list of essential commodities. ³⁴ These changes opened the door for large corporations, agribusiness firms, and e‐commerce companies to undercut local buyers, engage in stockpiling and price manipulation, and reduce farmers' bargaining power, particularly among small and marginal cultivators. ³⁵

Opposition to the new farm laws led to the largest protest in human history, with more than 250 million people observing a nationwide general strike in November 2020. ³⁶ Despite no gains from nine months of negotiations with the central government, the farmer protests have garnered widespread international support. Nonetheless, the demands among farmer unions to repeal the three new laws and receive assurance of a mandatory MSP are likely to benefit only those who own land and would not alter the circumstances for Dalit agricultural workers who are landless. ³⁷ In many districts, nearly all Dalit and Adivasi farmers work on land that they do not own. ³⁸ Although the protests may succeed in repealing the new laws, such a victory will have limited, if any, effects on the material security of agricultural workers if demands do not also include measures to reduce land alienation among Dalit and Adivasi farmers (and for women farmers, most of whom face both caste‐ and gender‐based discrimination); removal of wage ceilings; and strict prohibitions of violence and boycotts carried out by landlords against workers agitating for higher pay and better conditions. ³⁹

Covid‐19 has been described as a "great leveler" in India, affecting all people irrespective of caste, class, race, gender, or religion. ⁴² However, caste inequality has deepened, as traditionally disenfranchised groups have suffered the most severe economic impacts while also being blamed as the source of contagion and being forced to endure violence and mistreatment under the guise of hygiene and public health. ⁴³ In an attempt to decouple casteist connotations from Covid‐19 guidance, some have called for "social distancing" and "social isolation" to be reframed as "physical distancing," a symbolic gesture to combat stigmatization that will have no impact on the material realities of Dalits and Adivasis or of Muslims. In India, religious and caste discrimination often intersect, as 85 percent of Muslims in the nation are considered "Pasmanda," a Persian term that means "those who have fallen behind," referring to lower‐caste Muslims. ⁴⁴ Most Dalits, Adivasis, and Muslims are subjected to both implicit and explicit forms of untouchability without recourse against such abuses. ⁴⁵ Numerous examples of this scapegoating abound, such as health officials forcibly spraying lower‐caste migrant workers with industrial disinfectants, police repelling farmers with water cannons and characterizing the protests as "superspreader events," government officials subjecting religious and caste minorities to targeted surveillance and quarantine while overlooking larger religious and political gatherings supported by the ruling party, and the horrendous conditions Dalit and Bahujan crematorium workers endured without adequate pay or protective equipment during India's devastating second wave. ⁴⁶

Moving Forward

The ways we understand fundamental causes of disease shape the interventions, policies, and programs designed to address pervasive poor health outcomes and health disparities. Key to this understanding is the role of racial capitalism in producing material insecurity, whose impacts and dynamics are far reaching. One need only to think of the myriad ways in which the global pandemic and climate change compound each other. ⁴⁹ As the compound crisis develops, differences between levels of group vulnerability to climate disaster and associated socioeconomic impacts may have important political effects.

The theory of racial capitalism may provide researchers with useful frameworks for predicting and addressing these effects. Most importantly, such frameworks would add an explicitly political dimension to the discussion of exposure to environmental hazards and thus to health problems. We hope that the analysis offered here invites attention to these aspects of social structure by public health professionals and that it also promotes interest in and attention to the public health consequences of injustice by political theorists and other researchers. Racial, as well as caste and class, disparities in power and racist, casteist, and classist predation by states and corporations are direct causal determinants of health outcomes and are thus of direct relevance for public health researchers and professionals.

Acknowledgments

Anne E. Fehrenbacher was supported by a grant from the National Institutes of Health Fogarty International Center and the Office of Behavioral and Social Sciences Research awarded to the University of California Global Health Institute at the University of California, San Francisco (D43TW009343); a training grant from the National Institute of Mental Health awarded to the University of California, Los Angeles, Semel Institute for Neuroscience and Human Behavior (T32MH109205); and a center grant from the National Institute of Mental Health awarded to the UCLA Center for HIV Identification, Prevention, and Treatment Services (P30MH58107).

Notes

Taiwo Olufemi O., Fehrenbacher Anne E., and Cooke Alexis, "Material Insecurity, Racial Capitalism, and Public Health," Hastings Center Report 51, no. 6 (2021): 17-22. DOI: 10.1002/hast.1293 [[ PubMed] [ CrossRef] PMC free article] [ Google Scholar]

References

2. Laster Pirtle W. N., "Racial Capitalism: A Fundamental Cause of Novel Coronavirus (COVID‐19) Pandemic Inequities in the United States," Health Education & Behavior 47, no. 4 (2020): 504-8, at 504. [[ PubMed] PMC free article] [ Google Scholar]

3. Bierman A. S. and Dunn J. R., "Swimming Upstream: Access, Health Outcomes, and the Social Determinants of Health," Journal of General Internal Medicine 21, no. 1 (2006): doi: 10.1111/j.1525-1497.2005.00317.x. [[ PubMed] [ CrossRef] PMC free article] [ Google Scholar]

8. Bierman and Dunn , "Swimming Upstream."

9. Nandy S. et al., "Poverty, Child Undernutrition and Morbidity: New Evidence from India," Bulletin of the World Health Organization 83, no. 3 (2005): 210-16. [[ PubMed] PMC free article] [ Google Scholar]

13. Dorninger C. et al., "Global Patterns of Ecologically Unequal Exchange: Implications for Sustainability in the 21st Century," Ecological Economics 179 (2021): doi: 10.1016/j.ecolecon.2020.106824; J. Infante‐Amate and F. Krausmann, "Trade, Ecologically Unequal Exchange and Colonial Legacy: The Case of France and Its Former Colonies (1962-2015)," [ Ecological Economics 156 (2019): 98-109; J. T. Roberts and B. C. Parks, "Ecologically Unequal Exchange, Ecological Debt, and Climate Justice: The History and Implications of Three Related Ideas for a New Social Movement," International Journal of Comparative Sociology 50, no. 3-4 (2009): 385-409. [ CrossRef] Google Scholar]

14. Roberts and Parks , "Ecologically Unequal Exchange, Ecological Debt, and Climate Justice," 391.

15. See, for example, Millimet D. L. and Roy J., "Empirical Tests of the Pollution Haven Hypothesis When Environmental Regulation Is Endogenous," Journal of Applied Econometrics 31, no. 4 (2016): 652-77; D. K. Kellenberg, "An Empirical Investigation of the Pollution Haven Effect with Strategic Environment and Trade Policy," [ Journal of International Economics 78, no. 2 (2009): 242-55. Google Scholar]

16. Táíwò O. O., "What's Next," chap. 5 in Reconsidering Reparations, Philosophy of Race (New York: Oxford University Press, forthcoming).

22. Desmond M., [ Evicted: Poverty and Profit in the American City (New York: Broadway Books, 2016); M. Desmond, "Eviction and the Reproduction of Urban Poverty," American Journal of Sociology 118, no. 1 (2012): 88-133; M. Desmond and K. L. Perkins, "Are Landlords Overcharging Housing Voucher Holders?," City & Community 15, no. 2 (2016): 137-62; Higgins and Táíwò, "Enforcing Eviction." Google Scholar]

23. Snyder R. E. et al., "A Comparison of Social and Spatial Determinants of Health between Formal and Informal Settlements in a Large Metropolitan Setting in Brazil," Journal of Urban Health 91, no. 3 (2014): 432-45. [[ PubMed] PMC free article] [ Google Scholar]

24. de Gusmão H. N. B., "Mapa Racial de Pontos: Cidade do Rio de Janeiro," November 4, 2015, https://desigualdadesespaciais.wordpress.com/2015/11/04/mapa-racial-da-cidade-do-rio-de-janeiro/; W. Carless, "A Brazilian Student Mapped Out Rio's Segregation. What He Found Was Startling," The World, Public Radio International, November 5, 2015, at https://www.pri.org/.

30. Mahanand , "India's Pandemic Response Needed Ambedkar's Vision."

33. Jayaram N. and Varma D., "Examining the 'Labour' in Labour Migration: Migrant Workers' Informal Work Arrangements and Access to Labour Rights in Urban Sectors," Indian Journal of Labour Economics 63 (2020): 999-1019. [[ PubMed] PMC free article] [ Google Scholar]

34. Government of India, Ministry of Consumer Affairs, Food & Public Distribution , "Parliament Passes the Essential Commodities (Amendment) Bill, 2020," press release, September 22, 2020, https://pib.gov.in/PressReleasePage.aspx?PRID=1657657; Government of India, Ministry of Agriculture & Farmers Welfare, Press Information Bureau, "Parliament Passes The Farmers' Produce Trade and Commerce (Promotion and Facilitation) Bill, 2020 and The Farmers (Empowerment and Protection) Agreement of Price Assurance and Farm Services Bill, 2020," press release, September 17, 2020, https://pib.gov.in/Pressreleaseshare.aspx?PRID=1656929.

42. Deshpande and Ramachandran , "Is COVID‐19 'The Great Leveler'?"

43. Deshpande A., "How India's Caste Inequality Has Persisted-and Deepened in the Pandemic," Current History 120, no. 825 (2021): 127-32; Dalit Human Rights Defenders Network and S. Veeraraghav, [ No Lockdown on Caste Atrocities: Stories of Caste Crimes during the COVID‐19 Pandemic (New Delhi: Zubaan Books, 2021). Google Scholar]

45. Rahman S. Y., "'Social Distancing' during COVID‐19: The Metaphors and Politics of Pandemic Response in India," Health Sociology Review 29, no. 2 (2020): 131-39. [[ PubMed] Google Scholar]

46. Ahmad R. K., Ahmad M. S., and Shaik R. A, "India's Response to COVID‐19 Pandemic and Its Impact on Migrant Workers-a Public Health Perspective," International Journal of Current Research and Review 12, no. 21, special issue (2020): 2-4; Press Trust of India, "Superspreader Protest? As Experts Worry about COVID, Farmers Say New Laws Bigger Threat to Their Survival," [ Economic Times, November 30, 2020, https://economictimes.indiatimes.com/news/politics-and-nation/superspreader-protest-as-experts-worry-about-COVID-farmers-say-new-laws-bigger-threat-to-their-survival/articleshow/79492533.cms; Z. Ahmed, "Tablighi Jamaat: The Group Blamed for New COVID‐19 Outbreak in India," BBC, April 2, 2020, https://www.bbc.com/news/world-asia-india-52131338; G. Agoramoorthy and M. J. Hsu, "How the Coronavirus Lockdown Impacts the Impoverished in India," Journal of Racial and Ethnic Health Disparities (2020): 1-6; N. Kipgen, "COVID‐19 Pandemic and Racism in the United States and India," Economic & Political Weekly 55, no. 23 (2020): 21-26; P. Preet and R. Balachandran, "Letter to the Chief Justice of the Calcutta High Court Addressing Caste‐Based Labour in the Pandemic," May 4, 2021, SSRN, doi: 10.2139/ssrn.3842887; T. Bhattacharya, "Turning a Profit from Death: On Modi's Pandemic Response in Neoliberal India," Spectre Journal, May 3, 2021, https://spectrejournal.com/turning-a-profit-from-death/. [ CrossRef] Google Scholar]

49. Phillips C. A. et al., "Compound Climate Risks in the COVID‐19 Pandemic," Nature Climate Change (2020): 586-88.

Articles from The Hastings Center Report are provided here courtesy of Wiley

# data[].attributes.attachment_link.title
Material Insecurity, Racial Capitalism, and Public Health

# data[].attributes.attachment_link.description
In the influential 1995 article "Social Conditions as Fundamental Causes of Disease," Bruce Link and Jo Phelan described social and political factors as "fundamental causes" of death and disease. Whitney Pirtle has recently ...

# data[].attributes.headline
Structural Vulnerability: Addressing Health Disparities in Clinical Care

# data[].attributes.subject
Structural Vulnerability: Addressing Health Disparities in Clinical Care

# data[].attributes.body
the Concept to Address Health Disparities in

Clinical Care

# data[].attributes.headline
Decolonising ideas of healing in medical education

# data[].attributes.subject
Decolonising ideas of healing in medical education

# data[].attributes.attachment_link.title
Decolonising ideas of healing in medical education

# data[].attributes.headline
Developing an evidence-Informed decolonising curriculum wheel – A reflective piece

# data[].attributes.subject
Developing an evidence-Informed decolonising curriculum wheel – A reflective piece

# data[].attributes.headline
Twelve tips for LGBT+ inclusive undergraduate and postgraduate medical education

# data[].attributes.subject
Twelve tips for LGBT+ inclusive undergraduate and postgraduate medical education

# data[].attributes.attachment_link.title
Twelve tips for LGBT -inclusive undergraduate and postgraduate medical education

# data[].attributes.attachment_link.title
Berkeley professor explains gender theory | Judith Butler

# data[].attributes.attachment_link.title
PATRIARCHY, TOXIC MASCULINITY and MISOGYNY Part 1 : the psychology and belief structure.

# data[].attributes.headline
Exploring the critical state of trans healthcare in the UK through ‘medical drag’ re-enactments

# data[].attributes.subject
Exploring the critical state of trans healthcare in the UK through ‘medical drag’ re-enactments

# data[].attributes.attachment_link.title
Dr. XYZ: A Medical Drag Transthology (2023)

# data[].attributes.attachment_link.description
Dr. XYZ is an exercise in queering the healthcare information film. Shot on 16mm, it impersonates NHS training films from the 1960s-70s with a drag-satire twist. After collating an archive of healthcare experiences recorded with Birmingham's trans+ community, Dr. XYZ explores the critical state of trans healthcare in the UK through ‘medical drag’ re-enactments.

It was commissioned by the BFI x AHRC’s ‘NHS Untold Stories’ initiative and is currently circulating in NHS staff training networks.

# data[].attributes.attachment_link.title
Towards a universal model of family centered care: a scoping review - BMC Health Services Research

# data[].attributes.attachment_link.description
Background Families play an important role meeting the care needs of individuals who require assistance due to illness and/or disability. Yet, without adequate support their own health and wellbeing can be compromised. The literature highlights the need for a move to family-centered care to improve the well-being of those with illness and/or disability and their family caregivers. The objective of this paper was to explore existing models of family-centered care to determine the key components of existing models and to identify gaps in the literature. Methods A scoping review guided by Arksey & O’Malley (2005) examined family-centered care models for diverse illness and age populations. We searched MEDLINE, PsycINFO, CINAHL and EMBASE for research published between 1990 to August 1, 2018. Articles describing the development of a family-centered model in any patient population and/or healthcare field or on the development and evaluation of a family-centered service delivery intervention were included. Results The search identified 14,393 papers of which 55 met our criteria and were included. Family-centered care models are most commonly available for pediatric patient populations (n = 40). Across all family-centered care models, the consistent goal is to develop and implement patient care plans within the context of families. Key components to facilitate family-centered care include: 1) collaboration between family members and health care providers, 2) consideration of family contexts, 3) policies and procedures, and 4) patient, family, and health care professional education. Some of these aspects are universal and some of these are illness specific. Conclusions The review identified core aspects of family-centred care models (e.g., development of a care plan in the context of families) that can be applied to all populations and care contexts and some aspects that are illness specific (e.g., illness-specific education). This review identified areas in need of further research specifically related to the relationship between care plan decision making and privacy over medical records within models of family centred care. Few studies have evaluated the impact of the various models on patient, family, or health system outcomes. Findings can inform movement towards a universal model of family-centered care for all populations and care contexts.

# data[].attributes.attachment_link.description
Indigenous research ethics is a collective and diverse set of responses to the way in which research has historically been, and continues to be, something that has been done to, rather than with, Indigenous peoples and communities. More specifically, the wide range of writings on Indigenous research

# data[].attributes.attachment_link.description
True reproductive freedom requires a living wage, universal health care, and the abolition of prisons. Black women see the police slaughter of unarmed people in their communities as a reproductive justice issue. They recognize that women are frequent victims of racist police violence and that cuttin

# data[].attributes.attachment_link.title
Characterizing asset-based studies in public health: development of a framework

# data[].attributes.attachment_link.description
Asset-based approaches are becoming more common within public health interventions; however, due to variations in terminology, it can be difficult to identify asset-based approaches. The study aimed to develop and test a framework that could distinguish…

# data[].attributes.attachment_link.readable_text
Community strengths and assets

Building a stronger connection between the person and their community is mutually beneficial. The following evidence-based recommendations show ways in which the connection between a person and their community can be developed:

Use your own knowledge, networks and relationships to help identify assets and facilities within the local community.

During care planning, involve a practitioner who has the knowledge and competence to work with a range of social care, health and housing services, including those provided by the voluntary and community sector.

Support the person to identify the strengths and assets available in their community.

Share information with the person about resources and support available in the local community, including voluntary organisations, user-led organisations and disabled people's organisations (and promote more widely, for example in community spaces and services).

Provide information about access to peer support services and opportunities for the person to offer peer support (using their skills, life experience and cultural awareness).

Enable people using care and support services to build social connections and a sense of mutual support.

Support people with mental health issues to maintain links with their home community (including education, employment and social contacts) during inpatient stays and at discharge.

Make it as easy as possible for people to use and contribute to the support available in the community:

Are there any barriers that people might face? These could include being without access to IT for a range of reasons, childcare, access to transport, language, literacy, numeracy, low income or disability.

What support might help them overcome these barriers? For example, access to IT and digital training, using familiar and accessible places, providing childcare support and offering information in plain English, an accessible format or a different language.

# data[].attributes.attachment_link.title
Evidence for strengths and asset-based outcomes

# data[].attributes.attachment_link.description
Building a stronger connection between the person and their community is mutually beneficial. The following evidence-based recommendations show ways in which the connection between a person and their community can be developed: Use your own knowledge, networks and relationships to help identify assets and facilities within the local community.

# data[].attributes.attachment_link.description
Unconscious (or implicit) bias is a term that describes the associations we hold, outside our conscious awareness and control. Unconscious bias…

# data[].attributes.attachment_link.description
Our work looks at the experiences of disabled doctors and medical students in education, training and the workplace and the priority areas for action to ensure they are properly supported and represented.

# data[].attributes.headline
Why are Black mothers five times more likely to die during childbirth? 

# data[].attributes.subject
Why are Black mothers five times more likely to die during childbirth? 

# data[].attributes.attachment_link.title
Why are Black mothers five times more likely to die during childbirth? | Sonah Paton | TEDxBristol

# data[].attributes.headline
What it's like to be a disabled doctor working in the UK

# data[].attributes.subject
What it's like to be a disabled doctor working in the UK

# data[].attributes.headline
Transgender care and treatment guidelines

# data[].attributes.subject
Transgender care and treatment guidelines

# data[].attributes.attachment_link.authors[].name
Primary Author(s): Juno Obedin-Maliver, MD, MPH

# data[].attributes.attachment_link.title
Pelvic pain and persistent menses in transgender men | Gender Affirming Health Program

# data[].attributes.attachment_link.description
PENDING REVISION 2024 Introduction: Pelvic Pain Pelvic pain in transgender men can be a clinical challenge and has a broad differential diagnosis. Pelvic pain less than 6 months of duration is considered acute. Chronic pelvic pain, which is continuous or episodic pain in the lower abdomen or pelvis lasting more than 6 months, has a large differential.[1] History is a critical

# data[].attributes.attachment_link.description
Transgender, transsexual, non-binary, transmasc. What do these words mean?

# data[].attributes.headline
Advancing the access to diagnosis and treatment among women with CVD

# data[].attributes.subject
Advancing the access to diagnosis and treatment among women with CVD

# data[].attributes.body
diagnosis and treatment among women with

cardiovascular disease: a joint British

Cardiovascular Societies’ consensus document

# data[].attributes.attachment_link.description
In this new podcast and article series in The BMJ on decolonising health and medicine. Experts from around the world explore the importance of recognising how colonial histories live on in the ways we teach, define, and practice health and medicine today.