Philosophical expertise highlights patient voices in healthcare research and practice

A new six-year study aims to prevent the ‘silencing’ of patient voices in the healthcare system.

Doctor discusses results with a patient

The study will use philosophical expertise to explore the various ways in which patient views are neglected or dismissed before suggesting improvements.

Researchers at the University of Birmingham, University of Bristol and University of Nottingham have received a £2.6 million Wellcome Trust Discovery Grant for the project, entitled ‘Epistemic Injustice in Healthcare’ (EPIC).

Patients regularly report that their testimonies and perspectives are ignored, dismissed, or explained away by healthcare professionals. These negative experiences are injustices because they are unfair and harmful - and philosophers call them ‘epistemic’ because they jeopardise patient contributions to the shared knowledge on which good diagnosis and treatment can be based. Moreover, these negative experiences undermine trust in healthcare staff and systems.

By studying epistemic injustices in healthcare, EPIC will find ways to correct them and improve the relationship between patients and practitioners.

It is especially important for people with a mental health diagnosis to contribute to shared knowledge concerning their symptoms and to be involved in decisions about their treatment. This study will challenge the assumption that they are irrational or disconnected from reality.

Professor Lisa Bortolotti, Department of Philosophy

EPIC draws on the work by philosophers and social scientists, healthcare researchers and practitioners, and the testimonies and perspectives of patients and their advocates. The six case studies include labour pain, youth mental health, neurodiversity, cancer and depression, and later-life care.

As part of EPIC, University of Birmingham experts will lead on three of those case studies in collaboration with researchers from philosophy, psychology, conversation analysis, psychiatry, and biomedical ethics and colleagues at Aston University and City University of London in the UK, and the Universities of Bologna and Ferrara in Italy.

Principal Investigator, Professor Havi Carel (Bristol), said: “EPIC will provide the first systematic study of epistemic injustice across a range of healthcare settings. It will be the first to offer a set of empirical studies that will show how and when epistemic injustice appears. EPIC will also be the first funded project to seek ways to overcome epistemic injustice. We are incredibly excited and grateful to Wellcome to be given this opportunity to improve crucial aspects of healthcare, like communication, which is at the core of every healthcare interaction.”

Professor Carel will be joined by fellow Bristol academic, Professor Sheelagh McGuinness, who is an authority on health, gender, and the law. Dr Ian James Kidd, Assistant Professor in Philosophy at the University of Nottingham, is an epistemologist and a philosopher of illness.

Dr Kidd, who pioneered the study of epistemic injustices in healthcare alongside Professor Carel, explained: “Patients have long reported feeling ignored, dismissed, or silenced in ways that jeopardise their care and intensify their suffering.

“The challenge is to understand how this silencing happens and what can be done about it, in ways that can help patients and healthcare practitioners alike. The NHS is right to seek 'patient perspectives' and listen to 'patient voices'. EPIC will help them to do that better by fully diagnosing the causes of that silencing.”

The University of Birmingham team is Professor Lisa Bortolotti, a philosopher of psychiatry and editor of the journal Philosophical Psychology, and Professor Matthew Broome, an academic NHS psychiatrist and Director of the Birmingham Institute for Mental Health.

Professor Matthew Broome said: “I am delighted that Wellcome have funded this important work. Young people with poor mental health often have their views on their symptoms and treatment discounted by clinicians and wider society. This dismissal of testimony can be further compounded in those who are also from diverse backgrounds. This project will help young people with psychosis develop better relationships with clinicians, and to gain agency in determining their treatment, and ultimately improve outcomes.”

Professor Bortolotti added: "It is especially important for people with a mental health diagnosis to contribute to shared knowledge concerning their symptoms and to be involved in decisions about their treatment. This study will challenge the assumption that they are irrational or disconnected from reality, and so not worthy of being listened to. People with lived experience of mental health services actively participate in all aspects of the project, from designing the case studies to analysing the data and disseminating the results."

EPIC will study how people can be empowered to contribute to knowledge exchanges in situations where they may feel vulnerable and the target of prejudice. University of Birmingham academics will ask how the idea of epistemic injustice can be applied and tested in various mental health contexts that result in people being excluded from decision making.

Notes for editors

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