Evidence map›Paper›PMID 41761870›Full record

ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2026

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).

Hongyi Qin, Linda Pointon, James Carpenter, Vanessa Raymont, Ross Dunne, Suzanne Reeves, Shabinah Ali, Sabahat Iqbal, Cristina Bonet-Olivares, Joanne Whittle and 4 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Repurposed drug prioritization pipeline for a multi-arm platform trial in clinical Alzheimer's disease.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026
    Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors.

Hongyi QinDepartment of Public Information Resources Management, Zhejiang University, Hangzhou, China.ORCID https://orcid.org/0000-0002-5201-9905
Linda PointonDepartment of Psychiatry, University of Cambridge, Cambridge, UK.
James CarpenterMRC Clinical Trials Unit, University College London, London, UK.
Vanessa RaymontDepartment of Psychiatry, University of Oxford, Oxford, UK.
Ross DunneDepartment of old age psychiatry, Greater Manchester Mental Health NHS Foundation Trust, Manchester, UK.
Suzanne ReevesDepartment of old age psychiatry, University College London, London, UK.
Shabinah AliMRC Clinical Trials Unit, University College London, London, UK.
Sabahat IqbalDepartment of neurology, Imperial College London, London, UK.
Cristina Bonet-OlivaresDepartment of neurology, Imperial College London, London, UK.
Joanne WhittleMRC Clinical Trials Unit, University College London, London, UK.
Laura RizzoDepartment of neurology, Imperial College London, London, UK.
Paresh MalhotraUK Dementia Research Institute Care Research and Technology Centre, Imperial College London, London, UK.
Benjamin R UnderwoodDepartment of Psychiatry, University of Cambridge, Cambridge, UK.
AD‐SMART team

Funding

Alzheimer's Research UK Scientific Conference Sponsorship ARUK-SPON2024-001Efficacy and Mechanism Evaluation Programme NIHR165710National Institute for Health and Care Research (NIHR) Cambridge Biomedical Research Centre NIHR203312
6 · The paper itself

Abstract

introductionPatient 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.

methodsWe 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.

resultsAmong 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. DISCUSSION: Web-based PPIE can effectively inform dementia research at scale and provides a reusable resource for other studies.

Indexed as

Clinical Trials as TopicCommunity ParticipationDementiaPatient ParticipationAgedAlzheimer DiseaseFemaleHumansInternetMaleAlzheimer's diseaseclinical trialdiscrete choice experiments (DCEs)drug preferencespatient and public involvement and engagement (PPIE)

Identifiers

PMID41761870
PMCPMC12949453

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.