Involving research participants in a pan-European research initiative: the EPAD participant panel experience

Abstract

Background 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. 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. Methods In 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. Results The 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. Conclusions The 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.

Making the patient voice heard in a research consortium: experiences from an EU project (IMI-APPROACH)

“…One way of addressing these challenges is the model of a public-private partnership of engaged, knowledgeable and complementary industrial, academic and patient partners. In addition, there is extensive published evidence to suggest that involving people with lived experience of a condition in all stages of clinical trial design, both for interventional and observational studies, is important for successful implementation, outcomes and future decision-making [ 12 – 16 ]. This is also recognized by both EFPIA and IMI who have made active efforts to increase the involvement of people living with the condition studied in research projects they fund [ 17 – 19 ].…”

The European Prevention of Alzheimer's Dementia Programme: An Innovative Medicines Initiative-funded partnership to facilitate secondary prevention of Alzheimer's disease dementia

“…The findings suggest that participants may not expect to personally benefit from future clinical trials but wish to contribute toward drug development in AD, thus making them part of a future in which preventative medicine could 1 day help them, or people like them. The participant panel structure within EPAD was found to have a wide impact on the overall project, with examples of benefits including feedback on documentation, support on the design of novel recruitment materials, and representation of EPAD at national and international meetings ( 17 ). These articles evidence the important role participants played, both as data and sample donors, and active stakeholders in the EPAD project, lending credence to the value of this dataset to the wider AD community.…”

Remote data collection speech analysis and prediction of the identification of Alzheimer’s disease biomarkers in people at risk for Alzheimer’s disease dementia: the Speech on the Phone Assessment (SPeAk) prospective observational study protocol

“…Two participants from the EPAD LCS participant panel34 were involved in the study design process and reviewed the study documentation electronically. In particular, the participants were asked their opinions on whether they thought it was acceptable to conduct cognitive assessments on the telephone and their thoughts on receiving results from the assessments.…”