Major study will use philosophical expertise to highlight patient voices in healthcare research and practice
Press release issued: 15 March 2023
The Universities of Bristol, Nottingham, and Birmingham have been awarded a major £2.6 million Wellcome Discovery Grant for a six-year project which will use philosophical expertise to help bring patient voices into healthcare research and practice.
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 jeopardise patient care and undermine trust in healthcare staff and systems.
The project, called Epistemic Injustice in Healthcare [EPIC], will include case studies from across a range of illnesses, theoretical work, 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 Principal Investigator, Professor Havi Carel from the University of Bristol’s Department of Philosophy, is a philosopher of medicine and an expert on the experience of illness.
She said: “EPIC is 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 and 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.”
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 work with Professor Carel 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: “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.”
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. People with lived experience of mental health services will be actively contributing to all aspects of the project.”
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 benefiting from it.”
The project will begin in September 2023. Enquiries about the project should be sent to Professor Havi Carel at firstname.lastname@example.org