It has been a pleasure and privilege to be the PI of the Shame and Medicine Project over the last six years. Our project started in May 2020, in the midst of a UK Covid-19 lockdown and we found ourselves unexpectedly navigating the complications of hiring freezes, working from home with small children, navigating online meetings and an emergency in the NHS, all of which drastically slowed down our project activities (especially recruiting NHS doctors to take part in our study!). While Covid-19 gave us challenges, it also presented opportunities, and we were lucky to receive an AHRC Rapid Response to Covid-19 Grant for the Scenes of Shame and Stigma in Covid-19 Project. It was bleakly fortunate that a pandemic dubbed the public-shaming pandemic coincided with our project about shame in healthcare.
The Shame and Medicine project started initially from years of collaboration with Barry Lyons, an anaesthetist and medical educator at Trinity College Dublin, who many years ago said to me after learning about my PhD research about shame and body shame, “we have to do a project about shame in medicine, shame is everywhere in medicine and no one is talking about it”. This led Barry and me to receive funding from the Wellcome Trust: first a small grant, then a seed award, which culminated in our collaboration with our Co-I Matthew Gibson, at the University of Birmingham, and the £1.5million Collaborative Award, which made this project possible. The project has been based between the University of Exeter in the Centre for Cultures and Environments of Health, and the University of Birmingham, with Barry as our clinical collaborator from Children’s Health, Ireland.
Other project members include Arthur Rose, a literary studies scholar researching shame in medical memoir, Juanita Navarro-Páez, a PhD student looking at shame in graphic medicine comics. Stephen Williams and Farina Kokab have worked with Matthew to collect the empirical data from the NHS looking at negative self-conscious experiences of patients, medical students, GPs, hospital doctors, and doctors who have been referred to the GMC. Keeping the whole project afloat has been our amazing Project Coordinator, Alice Waterson, and we have also worked with creative facilitator Mary Robson.
I’m really proud of this research project. Shame is a topic that remains taboo in research. While it is obvious that negative self-conscious experiences are significant in healthcare, for patients and for students and professionals, there is still very little research on this topic, especially in the UK. We have done a lot during the six years of the project to try and fill this research gap. Our project team in Birmingham have collected an enormous amount of data, asking patients, medical students and doctors about their negative self-conscious experiences in the NHS. They have analysed the data from 204 participants in total (95 patients, 51 doctors, and 58 medical students), 777 individual diary entries (134 from patients, 312 from doctors and 331 from medical students) and 81 interviews (20 with patients, 41 with doctors and 20 with students). In addition, we have created comics illustrating medical student experiences of shame, working with some amazing artists. I worked with Will Bynum, a close collaborator, to make 10-part audio documentary series with The Nocturnists, a medical storytelling podcast, about shame in medicine – which was award winning and has been listened to by hundreds of thousands of people from all around the world. We have run 16 events, 4 seminar series and 3 conferences, collaborating with the Centre for Subjectivity Research in Copenhagen and the British Society for Phenomenology in the UK to co-organise events about shame in medicine. Our project members have spoken on podcasts, at conferences, as Keynotes and invited speakers. We have been inspired at the interest in this topic and our research, the engagement has been phenomenal. In particular, our Blog has been an amazing site where people from all walks of life (patients, academics, professionals, artists, clinicians) have shared their research and reflections.
Shame is something that affects us all, in different ways, and it is likely that every single one of us will experience some form of negative self-consciousness related to our bodies, health or within a healthcare setting. My own interest in this topic is driven by own lived experience of shame and chronic shame, and my on-going curiosity about why these sorts of experiences can have such a profound effect on what we are up to day-to-day. Shame can drive decision making, it can drive behaviour, it can shape our relationships with others. There are so many ways shame can impact medicine, health and healthcare and our research has covered so many aspects including: patient shame, shame and stigma, shame in Covid-19, public shaming of doctors, anticipated shame in healthcare, shame in medical schools and we have also theorised shame-sensitive practice, a framework to think about how we might train professionals to understand and recognise shame and its effects.
While our project is ending, our work will continue. We are still publishing results from our research, and a number of journal articles and at least two books are in process and should be published in the coming year or two. We have helped establish the Shame in Healthcare Network, so healthcare professionals interested in this topic can come together to share experiences, research and best practice. Please join the network if you would like to stay in touch and see where understanding shame in medicine takes us. Also, read our last Project Newsletter to find out ways to keep in touch with the Project Team and follow our continued work on shame in healthcare.
Shame and Medicine has tried to lift some of the taboo around shame and open up important conversations about this topic. We hope our work has brought some light and relief, especially for patients and professionals who have been struggling with difficult emotions. Much more work needs to be done, and we look forward to participating and watching the work that unfolds in the wake of our six years of work.
Luna Dolezal, PI Shame and Medicine Project, Professor of Philosophy and Medical Humanities, University of Exeter
16th December 2025
