PPIE in clinical trials at scale: analysis of the first 3,250 responses on the POrtal for Patient and Public Engagement in Dementia (POPPED)
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INTRODUCTION
Patient and public involvement and engagement (PPIE) is essential for improving research but is often limited in scale. This study explored the potential for large-scale involvement using a web-based approach.
METHODS
We created an online portal to collect feedback on dementia research and sought views on the forthcoming UK-based adaptive platform trial testing repurposed drugs for Alzheimer’s disease (AD-SMART). Participants completed a survey with a ranking task for four anonymized drugs prioritised for inclusion and discrete choice experiments (DCEs) on treatment attributes trade-offs.
RESULTS
Responses from over 3,250 people across 27 countries and 6 continents strongly supported for the trial. Metformin was the most preferred, followed by Atomoxetine , Isosorbide Mononitrate , and Levetiracetam . Safety ranked highest, followed by evidence of efficacy and convenience. Analyses were stratified by sex, age, and dementia experience.
DISCUSSION
Web-based PPIE can effectively inform dementia research at scale and offers a transferable model for other studies.
