By Professor Havi Carel, Department of Philosophy
A fellow patient was talking about a consultation that followed an examination, when she was still wearing the hospital gown. She felt that it was hard for her to offer her opinions, say what she wanted, and ask questions about her condition, because, as she poignantly put it, ‘it’s hard to think without your pants on!’.
How do we think, speak, ask questions and convey our views in different situations? This brief account opens questions about how patients are listened to, and how we can work together with health professionals to ensure that they are not only listened to but that what they say plays a key role in decision making processes in healthcare contexts.
Some patients have reported that their testimonies and perspectives are ignored, dismissed, or explained away by the healthcare profession. These experiences are classified by philosophers as ‘epistemic injustices’ because, in some cases, they are based on prejudice and can jeopardize patient care and undermine trust in healthcare staff and systems.
A new project I am leading with collaborators from the universities of Nottingham, Birmingham, and Swansea – ‘epistemic injustice in healthcare’ (EPIC) – will study this problem is its general form: why some patient voices are ignored and what healthcare systems can do to overcome this problem. The project is funded by a Wellcome Discovery Award, and will run for six years, with a budget of £2.6 million.
The project will include case studies from a range of illnesses, theoretical research, events, focus groups, the creation of a network with patients and health professionals, postdoctoral positions, summer schools, and publications. The project aims to identify practical measures for the benefit of patients and healthcare practitioners alike.
The core team also includes Professor Sheelagh McGuinness (Bristol), an authority on gender and the law in relation to healthcare, Professor Lisa Bortolotti (Birmingham), an expert in philosophy and psychiatry, Professor Matthew Broome (Birmingham), an academic NHS psychiatrist, and Dr Ian James Kidd (Nottingham) whose joint work with me pioneered the study of epistemic injustices in healthcare.
The EPIC team will be completed by eight postdoctoral researchers and a range of other researchers and collaborators from Swansea, City and Aston Universities, and the Universities of Bologna and Ferrara in Italy, making a team of around 30 researchers.
The six case studies will include labour pain, vaccination in immigrant children, young people and mental health, neurodiversity, cancer and depression, and dementia.
Professor Broome will lead a case study on youth mental health. He said: “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.”
EPIC will also work closely with patients and service users. Professor Bortolotti added: “It is especially important for people with a mental health diagnosis to contribute to shared knowledge concerning their symptoms and treatment. We will challenge the assumption that they are irrational or disconnected from reality, and so not worthy of being listened to.”
Dr Kidd said: “EPIC will also involve theoretical work elaborating on the concept of epistemic injustice. We have greatly expanded resources for conceptualising the variety of epistemic injustices. EPIC will contribute to that enrichment as well as benefitting from it.”
The project will begin in September 2023 and we wish Havi and the rest of the team every success.
Professor Havi Carel, Department of Philosophy, is a philosopher of medicine and an expert on the experience of illness.