Evidence map›Paper›PMID 41691358›Full record

ReviewResearch involvement and engagement2026

A rapid evaluation of the reporting and publishing practices of patient and public involvement and engagement in health research within a UK university institute.

Hannah May Scott, Lily Price, Margaret Ogden, Trishna Bharadia, Patrick Burke, Rachel Horne, Ava Harding-Bell, Alexander Tonkin, Alison Thomson

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Research involvement and engagement, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. 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

9 authors.

Hannah May ScottWolfson Institute of Population Health, Centre for Preventive Neurology, Queen Mary University of London, Charterhouse Square, London, EC1M 6BQ, UK. hannah.scott@qmul.ac.uk.ORCID http://orcid.org/0000-0003-1243-3500
Lily PriceSchool of Biological and Behavioural Sciences, Queen Mary University of London, London, UK.
Margaret OgdenPPIE co-author, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Trishna BharadiaPPIE co-author, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Patrick BurkePPIE co-author, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Rachel HornePPIE co-author, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Ava Harding-BellPPIE co-author, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Alexander TonkinPPIE co-author, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.
Alison ThomsonWolfson Institute of Population Health, Centre for Preventive Neurology, Queen Mary University of London, Charterhouse Square, London, EC1M 6BQ, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPatient and Public Involvement and Engagement is important to ensure research addresses the issues that matter most to patients and the public. However, reporting and publishing of these activities is variable and inconsistent. This rapid review aimed to assess how effectively, consistently, and transparently Patient and Public Involvement and Engagement is reported on in papers published by authors affiliated with a heath research institute at a UK Russell Group university.

methodsA rapid review of all papers published by institute-affiliated authors (1st August 2021 to 31st December 2024) identified using PubMed. We also consulted with a group of patient co-authors to understand their experiences of being a Patient and Public Involvement and Engagement co-author in collaboration with researchers from the same institute.

resultsWe retained and reviewed 523 papers for inclusion of Patient and Public Involvement and Engagement. There was significant variation in the reporting across the papers included. Overall, 21% of papers had reference to Patient and Public Involvement and Engagement activity in the main body of the paper, and 17% of papers included Patient and Public Involvement and Engagement in the acknowledgements. In terms of co-authorship, 5% of papers included an author with an affiliation to a charity/non-governmental organisation that represented Patient and Public Involvement and Engagement -related interested, e.g. Alzheimer’s Society, Caribbean and African Health Network and 1% of papers included a patient/lived-experience author. A total of 97% of papers were published open access but only 10% of articles included in this review had a plain English or lay summary. Only one paper included a published GRIPP2 form. The Patient and Public Involvement and Engagement group reviewed and contextualised our findings, supporting analysis and development of seven key recommendations to improve comprehensive, consistent, and transparent reporting of Patient and Public Involvement and Engagement in health research at an institute level.

conclusionsThis work demonstrates the challenges that Patient and Public Involvement and Engagement faces and the importance of institutions reflecting on the practices of their academics, and the structures they put in place to encourage good and equitable practices of working with patents and the public.

Indexed as

Health researchLiterature reviewPPIE

Identifiers

PMID41691358
PMCPMC13011311

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

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.