Research participants as collaborators: Background, experience and policies from the PREVENT Dementia and EPAD programmes.
AIM
Despite the growing importance of public and patient involvement in biomedical research, comparatively little attention has been paid to the important role of research participants themselves. Our aim in this paper is to explore the impact research participant involvement has within the PREVENT and the European Prevention of Alzheimer's Dementia (EPAD) projects.


METHOD
In this paper, we report the experiences of involving research participants as collaborators in prospective cohort studies exploring early changes in the brain as pathways towards and risks for dementia. We use minutes and feedback from members of the panel and steering committee to understand the experience and impact on the study.


RESULTS
We describe the aims and structure of the participant panel established within the PREVENT Dementia study and highlight its contributions to the organisation, conduct and future of the study. Key areas of contribution identified include recruitment, inclusion of additional sub-studies, understanding the participant experience and contributing to the future of the study.


DISCUSSION
We then describe how the PREVENT Dementia panel forms the basis for participant involvement within EPAD project.
['Gregory|Sarah|S|', 'Wells|Katie|K|', 'Forysth|Kate|K|', 'Latto|Cate|C|', 'Szyra|Helen|H|', 'Saunders|Stina|S|', 'Ritchie|Craig W|CW|', 'Milne|Richard|R|']
D000328:Adult D000544:Alzheimer Disease D035843:Biomedical Research D003256:Community Participation D003299:Cooperative Behavior D006801:Humans D008137:Longitudinal Studies D008875:Middle Aged D017146:Models, Organizational D010358:Patient Participation D011446:Prospective Studies D006113:United Kingdom
prevention dementia longitudinal cohort study patient and public involvement