"Minervation’s technical expertise and tactical nous has been indispensable to this groundbreaking project." - Sally Crowe, PRIME Project Manager.
The Partnership for Research in ME/CFS (the PRIME project) is a collaboration between patients, clinicians and researchers to improve understanding of patients’ experiences and support research which addresses their concerns. Minervation developed this project in partnership with the Royal College of Nursing Institute and led by Crowe Associates Ltd.
The project started from a recognition that:
- ME/CFS is an under-researched area
- Research does not represent patients’ experiences
- We need to know what research patients want to see done
- We need to help researchers to understand patients’ experience
- Certain types of patient experience are under-represented in the literature (men, older patients, severely affected patients, children)
The purpose of the site is to:
- Provide information about the project
- Enable researchers to develop a better understanding of people’s experiences of the disease
- Provide access to the Patient Experience Database, containing research into patient experiences carried by PRIME and its partners
- Enable people with ME/CFS to contribute their views and experiences in a safe, respectful environment.
The principal challenge for this project was to create a dynamic online community backed by a solid database of primary data around patients’ experiences. The site needed to support a new kind of partnership working, one in which the voices of severely affected people could be heard.
