‘It’s hard to think…’: Introducing the EPIC project studying better ways to hear patient voices

By Professor Havi Carel, Department of Philosophy, School of Arts

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. 

The Centre for Health, Humanities and Science: Who we are and what we do

By Professor Ulrika Maude, Director of the Centre for Health, Humanities and Science

The Centre for Health, Humanities and Science (CHHS) focuses on interdisciplinary and multidisciplinary research at the intersection of the humanities, health, medicine, and science. The CHHS was inaugurated in 2017 and it has almost two hundred members from across Bristol University’s six Faculties and from the NHS. It runs a regular research seminar with speakers from across the UK as well as from abroad, and hosts workshops, an annual lecture, public debates, mentoring lunches, funding workshops, postgraduate-led activities, and university-wide networking events.

CHHS members are at the forefront of developments in medical humanities research, disseminating their results through academic publications, events and public engagement activities. With the support of the Wellcome Trust and the Elizabeth Blackwell Institute, the CHHS has provided seed-corn funding for a diverse range of research projects, including grief and mourning; the senses; chronic conditions and their narratives; and health and illness in colonial film archives.

One CHHS seedcorn-funded project, Becoming Elizabeth Blackwell, centres on the Bristol-born doctor and social campaigner Elizabeth Blackwell (1821-1910) – the first British woman to be registered as a doctor by the General Medical Council, in 1859. The project has brought together Bristol academics, a playwright and theatre director, medical students and others to produce a playscript that will re-tell and celebrate Blackwell’s life and achievements.

Several CHHS members are currently involved in collectively writing a book on Key Concepts in Medical Humanities (forthcoming, 2024), which will provide a critical introduction to concepts such as ‘health’, ‘illness’, ‘contagion’, ‘feeling’, ‘neurodiversity’, ‘disability’, and ‘dying’, as well as offering chapters on key methodologies such as ‘Black Health Humanities’, ‘Graphic Medicine’, ‘Medicine and the Arts’ and ‘Narrative Medicine’. ‘Health’, for instance, is by no means a transparent concept, and the CHHS’s former Benjamin Meeker Professor, Alexandra Parvan, argues that ‘health cannot be taken merely as the outcome of biological tests or a clean medical sheet, nor should it necessarily be understood as a state restricted to the those designated as clinically healthy.’ Rather, Parvan argues for a nuanced conception of health, one that is ‘accessible to all’.

Current large-scale research initiatives at the CHHS include Sensing Spaces of Healthcare, led by historian Victoria Bates. Poor hospital design has a negative impact on healthcare outcomes, and the project seeks to rethink the NHS Hospital through the body and the senses, focusing on the lived experience of patients, visitors, and hospital staff with the aim of improving hospital design. And a multidisciplinary team led by philosopher Havi Carel has recently won Wellcome Trust funding for a six-year project on Epistemic Injustice in Healthcare (EPIC), which aims to address inequalities. Havi says,

‘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.’

EPIC aims to identify practical measures that can be taken for the benefit of patients and healthcare practitioners alike.

The Good Grief Festival, inaugurated in 2020, focuses on supporting those affected by the shared experience of bereavement and grief – topics that have for too long been considered taboo. Led by Lesel Dawson (English) and Lucy Selman (Bristol Medical School), ‘Good Grief’ regularly organises talks, interviews, webinars and workshops for the general public concentrating on the ways in which the crushing experience of grief can be shared and managed.

Notable projects from recent years include The Heart of the Matter exhibition, which toured the UK in 2018. The exhibition grew from artist Sofie Layton’s residency at Great Ormond Street Hospital for Children and was co-organised by CHHS Advisory Board member and bioengineer Giovanni Biglino. The artworks in the exhibition were inspired by young patients with heart conditions – as well as their families and doctors – and it invited visitors to discover the extraordinary complexity, intricacy and beauty of the heart as an organ.

For many years now the Centre has been involved in medical education through the Intercalated BA in Medical Humanities, an optional one-year degree for students of Medicine and Veterinary Science, taught jointly by English and Philosophy and directed by Advisory Board member, John Lee (English). With a wide range of international collaborators and an International Advisory Board, our members are also active in public engagement work through collaborations with the NHS, patient groups, and charities as well as museums, public gardens, libraries, and other cultural organisations.

For more information about the CHHS, please contact the Centre’s administrator, Elizabeth Gourd (e.c.gourd@bristol.ac.uk).

Professor Ulrika Maude, Centre for Health, Humanities and Science Director