# 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)

## TL;DR

A web-based platform called POPPED was used to gather public input on dementia research from over 3,000 participants, showing that large-scale patient and public involvement is feasible and effective.

## Contribution

The study demonstrates a scalable web-based approach for patient and public involvement in dementia research using discrete choice experiments.

## Key findings

- Metformin was the most preferred drug among participants for repurposed Alzheimer's disease trials.
- Probability of severe side effects was the most influential factor in participants' treatment preferences.
- A 2000-person cohort was established for future dementia-related public engagement activities.

## Abstract

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.

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.

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.

Web‐based PPIE can effectively inform dementia research at scale and provides a reusable resource for other studies.

Described a Web‐based platform (POrtal for the Patient and Public Engagement in Dementia Research [POPPED]) to scale patient and public involvement and engagement (PPIE) in dementia research.Engaged 3000+ participants globally to prioritize Alzheimer's disease (AD) drugs for the Alzheimer's Disease‐Systematic Multi‐Arm Adaptive Randomized Trial (AD‐SMART) trial.Discrete choice experiments (DCEs) found side effects outweighed all other drug attributes.Built a 2000‐person cohort for future dementia PPIE activities.

Described a Web‐based platform (POrtal for the Patient and Public Engagement in Dementia Research [POPPED]) to scale patient and public involvement and engagement (PPIE) in dementia research.

Engaged 3000+ participants globally to prioritize Alzheimer's disease (AD) drugs for the Alzheimer's Disease‐Systematic Multi‐Arm Adaptive Randomized Trial (AD‐SMART) trial.

Discrete choice experiments (DCEs) found side effects outweighed all other drug attributes.

Built a 2000‐person cohort for future dementia PPIE activities.