Abstract
BackgroundIncluding participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologies of how to set up and manage participant involvement activities. Further, there is little discussion of how to do so when dealing with collaborative projects that run across countries and operate in multiple linguistic and regulatory contexts.MethodsIn this paper we describe the set-up, running and experiences of the EPAD participant panel. The EPAD study was a pan-European cohort study with the aim to understand risks for developing Alzheimer’s disease and build a readiness cohort for Phase 2 clinical trials. Due to the longitudinal nature of this study, combined with the enrolment of healthy volunteers and those with mild cognitive impairments, the EPAD team highlighted participant involvement as crucial to the success of this project. The EPAD project employed a nested model, with local panels meeting in England, France, Scotland, Spain and The Netherlands, and feeding into a central study panel. The local panels were governed by terms of reference which were adaptable to local needs.ResultsThe impact of the panels has been widespread, and varies from feedback on documentation, to supporting with design of media materials and representation of the project at national and international meetings.ConclusionsThe EPAD panels have contributed to the success of the project and the model established is easily transferable to other disease areas investigating healthy or at-risk populations.
Highlights
The importance of patient and public involvement in health care research has been increasingly acknowledged over the last 25 years [1, 2]
Plain English summary This paper reports on the set up, running and experiences of patient and public involvement in a European dementia prevention study
The European Prevention of Alzheimer’s Dementia (EPAD) project was set up to understand more about risks for developing dementia in people with no or mild symptoms, and to create a group
Summary
The importance of patient and public involvement in health care research has been increasingly acknowledged over the last 25 years [1, 2]. Opportunities for public and patient involvement range from involvement in the commission and design of research ideas through to involvement in the active process of managing the research study as well as dissemination of findings. Review bodies such as the UK based Health Research Authority (HRA) and many funding bodies strongly encourage such PPI activities as part of a applications, and the INVOLVE network has been established in the UK to support integration of PPI into health and social research [3, 4]. Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. There is little discussion of how to do so when dealing with collaborative projects that run across countries and operate in multiple linguistic and regulatory contexts
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