Why Disabled Voices Must Be Central to Health Research

Disabled people can experience profound health disparities. Yet, while these inequities are well-documented, one key question remains under-asked: who is conducting the research meant to address them?

In our paper, published in the Journal of Medical Ethics, we argue that the health research community must urgently confront a gaping omission - the absence of disabled researchers from within its own ranks. This exclusion, we contend, constitutes a form of epistemic injustice. Without the voices of disabled scholars at the table, how can we claim to fully understand, let alone solve, the very issues that affect them?

Epistemic injustice, a term first introduced by Miranda Fricker (2007), refers to a wrong done to someone in their capacity as a knower - denial of credibility or the opportunity to contribute knowledge. When disabled people are systemically excluded from academic research, their perspectives, insights, and lived experiences are undervalued or erased entirely. This leads to skewed understandings of disability and results in research, policy, and clinical practice that fail to capture the complexity of disabled lives.

The lack of representation is not accidental. Across the UK academy, structural and attitudinal barriers persist: inaccessible environments, discriminatory hiring practices, and a pervasive lack of institutional support. The “pipeline” for aspiring disabled health researchers is fractured at every level, from education through to recruitment, career progression, and funding. Often, disabled individuals must fight battles on multiple fronts just to gain access to a field that should be enriched by their insight.

                                    

We believe this silence has serious consequences. Disabled people are routinely positioned as objects of study, but rarely as agents of research. Their lived expertise is essential, not optional. Research that is truly inclusive and ethically grounded must involve those with direct experience of the issues at hand. Anything less reinforces the very inequalities we purport to address.

What needs to be done?

The good news is that change is possible. Academic institutions must take deliberate steps to dismantle these barriers - not through tokenism, but through genuine structural reform. Accessibility must be embedded into the fabric of research environments. Recruitment strategies must be inclusive by design. Mentorship and funding opportunities must actively support disabled scholars.

We also call on funders and policymakers to recognise the urgency of this issue. Resources should be directed towards diversifying the research community including supporting disabled-led research and scholarship that challenges dominant, often medicalised, narratives of disability.

Ultimately, we wrote this paper not just to critique the status quo but to imagine a better future: one in which disabled scholars are central to health research, shaping agendas, asking the right questions, and leading the work that affects their own communities. When research includes disabled voices, it becomes more accurate, more ethical, and more impactful.

We must fix the pipeline - not only to advance equity, but because the future of health research, and the well-being of the most overlooked population in society, depends on it.

Charlotte Blease (PhD) is an Associate Professor at Uppsala University. She is a health informaticist whose research spans philosophy, psychology, cognitive science and medical humanities. She is co-author of The Nocebo Effect: When Words Make You Sick. More about her research can be found here.

Joanne Hunt (MSc, MBACP, GMBPsS) is a disabled researcher with a background in psychological therapies. Her interdisciplinary research is sited at the intersection of disability studies, psychology, feminist studies and ethics, and includes the biopolitics of medically and societally ‘contested’ chronic illness and related disability. More about her research can be found here.

For more on ableism in academia see Brown, N (2021) and Brown, N & Leigh, J (2020).

The Patient Experience Library

In this post, Havi Carel interviews Miles Sibley about the Patient Experience Library.

Havi Carel (HC): What is the Patient Experience Library? 

Miles Sibley: The Patient Experience Library acts as the national evidence base for patient experience and engagement. Operating as an online research database it contains studies and reports from sources including government bodies, patient voice organisations, health charities, academic institutions and policy think tanks. The repository runs to tens of thousands of documents, and more are being added all the time.  So the library also works on knowledge translation – helping policymakers, clinicians and patient advocates to understand what is in the research, and how to use it.  

HC: Why did you set it up? 

MS: We set up the library after realising that an NHS aiming to be both patient-centred and evidence-based actually had no coherent evidence base for patient experience.  Health services draw on multiple medical research databases to inform policy, professional training, clinical guidelines and more.  But there was no equivalent for patient experience.  So we built the library to plug the gap.   

HC: What are the barriers to accessing data on patient experience?

MS: Firstly, the data is a mess.  It comes from the Friends and Family Test, complaints, national patient surveys, the local Healthwatch network… All this and more is published across multiple websites and can be very hard to keep track of. 

Secondly, there is no organisational memory.  Government funded “patient voice” initiatives began with the Community Health Councils in the 1970s. Those were succeeded by Patient and Public Involvement Forums, then by Local Involvement Networks, before the current iteration, Healthwatch.  All gathered large volumes of evidence on patient experience, but it was never properly catalogued and preserved. So as each initiative shut down, its entire body of knowledge went with it.

Thirdly, there is no research prioritisation at the national or strategic level.  While medical research is (at least to some extent) geared towards reducing duplication and opening up new areas of knowledge, patient experience research is, essentially, a free-for-all.  There is extensive waste and duplication, along with large gaps – particularly when it comes to marginalised groups such as minority communities, or people with rare diseases.

One of the posters
by the Patient Experience Library

HC: Why do you think it's important to overcome these?

MS: For reasons of equity and justice.  

For example, the NHS promises equal access to its services for all citizens.  But the reality is that the poorest people in the poorest communities always have the poorest health, and usually have the worst access to services.  Statistics on mortality and morbidity can help us to understand some of the consequences.  But to really understand health inequity, we need to hear from the people most affected by it.

Another example:  inquiries into avoidable harm (eg from pelvic mesh, or deaths in maternity services) always tell of patient concerns being deflected and denied.  Medical records are respected and trusted, while patient feedback is dismissed as "anecdotal evidence".  This deep-seated epistemic injustice lies at the heart of harm.

One more: medicine has a fantastic learning infrastructure.  Clinicians are given world class learning support though professional training, clinical guidelines, practice protocols, diagnostic aids, conferences and journals.  But people charged with hearing "patient voice" (PALS teams, complaints handlers etc) have no professional qualifications, no analytics, and no professional forums.  Their learning support is deemed unimportant because lived experience is also deemed unimportant.

HC: What do you hope the patient experience library will achieve?

MS: We see a double standard in evidence-based practice: medical evidence is cherished and respected, while patient experience evidence is considered an optional extra.

So we want to end the double standard. Our steps towards that include:

• Building the evidence base. The library is an open access repository of evidence on patient experience: the only one of its kind in the world. Medical research databases are taken for granted – we want to show that a patient experience research database is equally feasible.
• Building analytics.  Patient experience evidence doesn't have to be incomprehensible.  Our surveys tracker, for example, puts key datasets for English NHS Trusts all in one place and cross-references key themes to aid understanding.
• Mapping the evidence.  Patient experience research should not be a free-for-all, with some communities permanently excluded.  Our evidence mapping shows that it is possible to lay the foundations for better prioritisation and higher value research.

Ultimately, we are on a mission to get patient experience evidence taken as seriously as medical evidence.  We are showing how that can be done.  Our work is both a challenge and a helping hand to an NHS that says it wants to be patient-centred.

Miles Sibley is a co-founder and Director of the Patient Experience Library. As an advocate for healthcare services that are both person-centred and evidence-based, he has served on the Board of HQIP, and is currently a Non-Executive Director with Care Opinion. He is the author of Inadmissible Evidence and has written numerous articles on patient and public involvement for the BMJ and others.