Patient-led methodology discussed at student-run conference

Patient Led Methodology Workshop Setup With Big Screen Displaying Health Experience Tree Graphic

How can lived experience be used in research? What challenges and opportunities arise when studying a topic that directly impacts you? These questions were among those discussed  ‘Knowing me, knowing you: patient-led methodology as an approach for researching health and illness’ at Green Templeton on Friday 9 June 2023.

The event was part of the British Sociological Association Postgraduate Research Forum and was held in partnership with the gender health organisation Medical Herstory and the Patient-Led Research Collective.

Co-hosts Tori Ford (DPhil Primary Health Care, 2021) and Amelia Talbot (DPhil Primary Health Care, 2020) report

‘Patient-led methodology’ is when researchers with lived-experience of an illness actively use their experiences to inform and direct their research.

The event brought together researchers and advocates working to develop this emerging methodology that puts patients at the forefront of research. Throughout the day, as co-hosts we introduced attendees to how patient-led methodology works in practice.

The day opened with Amelia introducing patient-led methodology and its history. She reflected on her experiences of being a patient-led methodologist and highlighted some strengths and challenges with this approach.

Patient Led Methodology Workshop Setup With Big Screen And Participants Seated Around Tables

Invited speakers included Bakita Kasadha who spoke on honouring lived experiences in health research, Sarah Harris on her endometriosis journey which inspired her research journey, Suranjeet Singh who spoke about the power of community activism with his organisation Taraki, and Jeremy Leslie-Spinks (DPhil Primary Health Care, 2020) on career-changing illness for dancers.

The day also included an interactive workshop on ‘How to plan your patient-led project’ where Tori encouraged the group to delve into issues of disclosure, trauma-informed methods, and how to find, tell, and protect your story. The day concluded with ‘ask the patient-led methodologists’ where delegates engaged with our panel of experts: Tori, Amelia, Shuranjeet, and Jeremy.

Discussion throughout the day brought up questions around the boundaries of patient-led research, how it differed from other participatory frameworks, and what the implications of being a patient-researcher look like within the university context. These queries are being explored in a paper, ‘what is patient-led methodology?’ that Amelia, Tori, and Bakita are co-authoring.

Key takeaways included that patients are the experts of their lived experience, that issues of safety and disclosure must be taken seriously, and that patient-led research holds the potential to be disruptive and transformative.

The day concluded by pointing to resources such as Medical Herstory which supports patient-led research projects by sitting on advisory committees, partnering on grant applications, assembling patient groups, and disseminating findings through workshops or media campaigns.

Further events will be shared through the Patient-Led Research Collective newsletter (to sign up email amelia.talbot@phc.ox.ac.uk) and follow us on Twitter and on Instagram.

Created: 6 July 2023