Raise awareness of epistemic injustice to improve healthcare in England
This briefing summarises the interim findings from project EPIC, a 6-year, multi-university, multidisciplinary research project. EPIC is a collaboration between the universities of Bristol, Birmingham, and Nottingham. It draws on research methods from a range of humanities and social science disciplines, which it applies to first-person accounts of ill persons and healthcare professionals, survey data, archival documents, and case studies.
About the research
What ill persons say is often dismissed and ignored because of prejudices related to illness and disability. This is an epistemic injustice: an injustice committed against such persons when they try to communicate their knowledge, needs and beliefs. Such injustices can have tremendous human and financial costs, including damaging trust in healthcare institutions, undermining diagnosis and care, and preventing improvements to healthcare.
‘EPIC’ is a 6-year, multi-university research project, that aims to understand and address the epistemic injustices faced by ill persons. It does this by drawing on interviews and accounts of ill persons and healthcare professionals, real-world case studies of healthcare provisions, and insight from a range of disciplines.
Key findings
High-quality healthcare requires valuing and incorporating the experiences and insights of ill persons, family members, and healthcare professionals into medical decision-making. But this is often not the case.
Our research shows that ill persons frequently face epistemic injustice: they are unfairly dismissed or discredited when expressing their experiences due to stigma, communication barriers, and institutional shortcomings. An example of this would be if a GP does not take seriously a woman’s complaints of pain because they stereotype women as ‘over-emotional’. This can erode trust, reduce service engagement, worsen outcomes, and increase the vulnerabilities of ill persons.
We need to strive for epistemic justice, ensuring that ill persons, their families, and healthcare professionals are seen and treated as credible sources of knowledge. This is not a matter of superficial validation merely to make the individual feel better. It is a matter of resolving a fundamental issue that continues to grip the NHS.
Drivers of epistemic injustice
- Pathophobia: This refers to the variety of negative attitudes, assumptions, and behaviours that specifically target people who are ill. Examples include disgust, callousness, and morbid curiosity. Often, it intersects with sexism, racism, ableism, and other kinds of prejudice and discrimination.
- Epistemic objectification: Many ill persons feel they are treated as a problem to solve or as a condition waiting to be diagnostically labelled rather than a person with complex interests and goals who can contribute to the interaction.
- Institutional opacity: Healthcare service users and even professionals report experiencing some healthcare institutions as ‘institutionally opaque’, meaning they don’t know how to navigate the institution effectively or make themselves heard within it.
- Epistemic inflexibility: Narrow and rigid assumptions about how medical knowledge should be obtained and communicated are common within health services and society. Consequently, service users’ attempts to share knowledge may be dismissed when they do not use the ‘right’ language or channels.
Policy recommendations
The first step in addressing epistemic injustice in healthcare is to equip healthcare professionals and people using healthcare services to recognise and understand the problem. To this end, we suggest the following:
- Enhance training for healthcare professionals on how common assumptions about ill persons and specific health conditions can give rise to epistemic injustice.
- Commission easy-to-digest guides for health service users about common epistemic injustices in healthcare and why they occur, making these available e.g. on the NHS and Care Quality Commission websites, in GP surgeries, and via Patient Liaison Services.
- Commit to addressing epistemic injustice in key policy documents such as the new NHS Constitution and the NHS 10-Year Plan.
- Track epistemic injustice via the NHS England National Patient and Staff Surveys by including questions designed to elicit information about ill persons’ experiences of being listened to and understood.
The authors
Dr Dan Degerman (University of Bristol), Professor Havi Carel (University of Bristol), Professor Sheelagh McGuiness (University of Bristol), Dr Ian James Kidd (University of Nottingham), Dr Eleanor Byrne (University of Nottingham), Dr Kathleen Murphy-Hollies (University of Birmingham), Jude Williams (University of Birmingham), Professor Lisa Bortolotti (University of Birmingham)
Further information
The project is generously funded by the Wellcome Trust (grant: 226603/Z/22/Z), ‘EPIC: Epistemic Injustice in Healthcare’. Please visit the EPIC project website for more information.
Image: ‘Confusion’ by medical student Louise Carter. Featured in
the Bristol Medical School arts curation ‘Out of our Head'
Policy Briefing 171: March 2025
Raise awareness of epistemic injustice to improve healthcare in England (PDF, 534kB)
Contact
For more information, please contact the project manager, Charlotte Withers: charlotte.withers@bristol.ac.uk
3-184x184.png)
