Multi-layered medical uncertainty
Research type
Research Study
Full title
Multi-layered medical uncertainty: The interaction between medical research, the clinic and patient experience in the context of highly uncertain conditions
IRAS ID
328537
Contact name
Cinzia Greco
Contact email
Sponsor organisation
University of Manchester
Duration of Study in the UK
4 years, 1 months, 28 days
Research summary
This project explores the different forms of medical uncertainty in the cases of fibromyalgia, ME/CFS, Long Covid and chemobrain. It studies the experiences of patients and medical professionals, the debates around the four conditions, and how the different forms of uncertainty influence each other and are linked with socio-economic vulnerability. Medical uncertainty is an essential component of clinicians, researchers and patients’ experiences and can have significant impact in terms of difficulties in reaching diagnoses or identifying appropriate treatments.
The project uses qualitative in-depth interviews, documentary analyses and analyses of debates on social media. In-person, online and phone interviews will be conducted across the UK, and online debates in English will be analysed. Participants will include clinicians and researchers working on the four conditions in the UK, and patients with the conditions (both formally diagnosed and in the diagnostic process). The project is based at the University of Manchester but will recruit some participants through and interview some clinicians at NHS Trusts.
All four the conditions have been characterised by uncertainty about the causes and diagnosis in recent history, are not fully recognised in the society at large, and have limited specific treatments. The project will therefore explore the experience of the patients, including the relations with the healthcare system, and their impact on their life, work, and social relations. Further, the project will explore how clinicians and researchers deal with the uncertainties linked to the four conditions in their work.
The project further includes a public engagement component that aims to produce materials to increase the awareness of the four conditions among students of medicine and allied disciplines, as well as among medical professionals who are not specialised in the management of any of the four conditions. The research is funded by the Wellcome Trust through a Career Development Award.REC name
West Midlands - Edgbaston Research Ethics Committee
REC reference
23/WM/0280
Date of REC Opinion
21 Feb 2024
REC opinion
Further Information Favourable Opinion