Patient and public involvement and engagement in clinical trials at scale: analysis of the first 3250 responses on the POrtal for Patient and Public Engagement in Dementia (POPPED)
Author(s)
Type
Journal Article
Abstract
INTRODUCTION
Patient and public involvement and engagement (PPIE) improves research quality but is often limited in scale. This study explored the potential for large-scale PPIE using a Web-based approach.
METHODS
We created an online portal to gather public views on dementia research and a UK-based adaptive platform trial testing repurposed Alzheimer's disease drugs. Participants ranked four anonymized drugs and completed discrete choice experiments on treatment trade-offs. Analyses were stratified by sex, age, and dementia experience.
RESULTS
Among 3250 people across 27 countries (87.4% UK-based), 79.6% expressed positive attitudes toward the trial. Metformin was the most preferred drug, followed by atomoxetine, isosorbide mononitrate, and levetiracetam. Probability of severe side effects was the most influential treatment attribute, followed by probability of mild side effects and type of evidence. Subgroup analyses supported the main findings.
Patient and public involvement and engagement (PPIE) improves research quality but is often limited in scale. This study explored the potential for large-scale PPIE using a Web-based approach.
METHODS
We created an online portal to gather public views on dementia research and a UK-based adaptive platform trial testing repurposed Alzheimer's disease drugs. Participants ranked four anonymized drugs and completed discrete choice experiments on treatment trade-offs. Analyses were stratified by sex, age, and dementia experience.
RESULTS
Among 3250 people across 27 countries (87.4% UK-based), 79.6% expressed positive attitudes toward the trial. Metformin was the most preferred drug, followed by atomoxetine, isosorbide mononitrate, and levetiracetam. Probability of severe side effects was the most influential treatment attribute, followed by probability of mild side effects and type of evidence. Subgroup analyses supported the main findings.
Date Issued
2026-02-01
Date Acceptance
2025-12-04
Citation
Alzheimer's and Dementia, 2026, 22 (2)
ISSN
1552-5260
Publisher
Wiley
Journal / Book Title
Alzheimer's and Dementia
Volume
22
Issue
2
Copyright Statement
© 2026 The Author(s). Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
License URL
Identifier
https://www.ncbi.nlm.nih.gov/pubmed/41761870
Subjects
Alzheimer's disease
clinical trial
discrete choice experiments (DCEs)
drug preferences
patient and public involvement and engagement (PPIE)
Humans
Dementia
Male
Female
Patient Participation
Aged
Clinical Trials as Topic
Middle Aged
Internet
Aged, 80 and over
Community Participation
Publication Status
Published
Coverage Spatial
United States
Article Number
e71113
Date Publish Online
2026-02-28