Involving study participants as real collaborators – moving beyond collecting data

We are pleased to see the PREVENT Dementia and EPAD projects featured in a recent special issue of the journal Dementia. All articles in this edition themed around patient, participant and public involvement. The paper was led by Sarah Gregory from the University of Edinburgh with contributors from University of Edinburgh, Cambridge Institute of Public Health and Imperial College London as well as research participants in the PREVENT study.

For both the PREVENT Dementia and EPAD studies, participant involvement has been key from the outset and we were delighted to be invited to share our experiences with our academic colleagues. We primarily focused on what we’d learnt from PREVENT Dementia and the participant panel that has been established for a number of years. The participant panel is a group of participants actively involved in the study who meet with PREVENT Dementia researchers twice a year to discuss their experiences and advise on all aspects of the study. We did this by looking at the minutes of meetings from the panel and the steering committee (a group of experts who meet twice yearly to oversee the ongoing management of the study) and seeking feedback from both panel and steering committee members. The areas of the study that particularly benefited from participant involvement were:


  • Recruitment: by working with the panel, the researchers were able to change the study information sheets to improve interest of those without a family history of dementia. The panel were also great advocates of the study and helped directly recruit many participants through word of mouth


  • Adding additional smaller studies (‘sub-studies’): the panel have been able to advise which additional studies would, in their view, be of interest and have acceptable levels of time burden. This has allowed researchers to feel confident in adding these additional studies and offering to the wider participant group


  • Study experience: constant feedback was available from the panel on study experiences meaning any changes needed at the study site could be made. In particular feedback around expectations of lumbar punctures, an optional procedure in PREVENT Dementia which allows the collection of a small amount of cerebrospinal fluid (CSF), led to the development of a video which is now commonly used across the different centres


  • Supporting the future: as PREVENT Dementia has developed, funding to continue the project has been a key concern. The panel were instrumental in establishing the fundraising work and membership schemes which now support some of the PREVENT Dementia activity


The paper finishes by describing how we have taken the success of PREVENT Dementia into the European Prevention of Alzheimer’s Dementia (EPAD) Consortium, with participant panels either already established, as in Scotland, or in the process of being established.

The paper is currently available to the public here 


Paper Citation

Gregory, S., Wells, K., Forysth, K., Latto, C., Szyra, H., Saunders, S., Ritchie, C.W. and Milne, R., 2018. Research participants as collaborators: Background, experience and policies from the PREVENT Dementia and EPAD programmes. Dementia17(8), pp.1045-1054.