Evidence map›Paper›PMID 40770631›Full record

ReviewBMC psychiatry2025

Emerging practice in mental health patient and public involvement research advisory groups: a narrative review.

Vanessa Pinfold, Abigail Burgess, Lisa Couperthwaite, Emma Garavini, John Gibson, Roya Kamvar, Alexandra Kenny, Tanya MacKay, Georgia Naughton, Rachel Temple

Abstract readReview
In one paragraph

Review in BMC psychiatry, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing 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

5 citing papers in PubMed.

  1. Article
  2. Article
  3. How Lived Experience Advisory Groups Contribute to the Design and Conduct of Mental Health Research.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  4. Article
  5. 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

10 authors.

Vanessa PinfoldThe McPin Foundation, London, UK. vanessapinfold@mcpin.org.ORCID http://orcid.org/0000-0003-3007-8805
Abigail BurgessThe McPin Foundation, London, UK.ORCID http://orcid.org/0000-0002-0074-2392
Lisa CouperthwaiteThe McPin Foundation, London, UK.ORCID http://orcid.org/0000-0001-5200-0270
Emma GaraviniThe McPin Foundation, London, UK.ORCID http://orcid.org/0000-0003-2067-3838
John GibsonThe McPin Foundation, London, UK.ORCID http://orcid.org/0000-0003-1731-4869
Roya KamvarThe McPin Foundation, London, UK.ORCID http://orcid.org/0009-0001-4813-8119
Alexandra KennyThe McPin Foundation, London, UK.ORCID http://orcid.org/0000-0002-0162-9009
Tanya MacKayThe McPin Foundation, London, UK.ORCID http://orcid.org/0000-0002-3208-2077
Georgia NaughtonThe McPin Foundation, London, UK.ORCID http://orcid.org/0000-0003-0798-5095
Rachel TempleThe McPin Foundation, London, UK.ORCID http://orcid.org/0000-0002-3126-5701

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe involvement of experts by experience in health research is a requirement from major funders across the world. One approach is Patient and Public Involvement (PPI) research advisory groups. This narrative review surfaced emerging practices in these groups based upon research papers that evaluated their own activities.

methodsPapers published between 1/1/ 2014 and 10/1/2024 containing advisory group or related terms in the title or abstract were included. Articles had to focus on mental health and describe the evaluation of PPI research advisory groups. Articles where the PPI research advisory group was not the central focus were excluded.

resultsWe identified 26 papers. Different terms were used and categorised as: Community Advisory Boards; Stakeholder Groups; PPI Groups; Young People Advisory Groups. There was a growth in literature over time; 42% of articles were published in 2023. Youth involvement was covered in 13 papers (50%). Many included a group member as an author (14 papers). Geographically most studies came from UK (n = 10), followed by Australia (n = 5) and Canada (n = 4). Our analysis identified nine themes and 123 sub-themes under: principles and values; group formation; running groups; facilitators; barriers; impacts on PPI group members; impacts on researchers; impacts on mental health research; recommendations. Commonalities in emerging practices included themes relating to: the importance of communication; an inclusive focus ensuring diversity of perspectives; choice and flexibility in how people are involved; creating safe spaces for involvement work; importance of detailed planning processes; and strategies to address power and hierarchy in research. DISCUSSION AND

conclusionThis field of practice is rapidly developing, building on well-established models such as Community Advisory Boards, underpinned by an epistemic justice value base. Our positionality led us to conclude more participatory evaluations from cross cultural partnerships delivering PPI research advisory groups would be beneficial to the mental health research ecosystem. This review would also benefit from an update to capture publications from 2024 onwards. PATIENT AND PUBLIC CONTRIBUTION: The study was conceptualised and delivered by nine people working from a lived experience perspective in peer research and public involvement. All are authors on this paper.

Indexed as

Advisory CommitteesCommunity ParticipationMental HealthPatient ParticipationHumansAdvisory groupsLearning and development for patient and public involvementLived experienceMental healthYoung people

Identifiers

PMID40770631
PMCPMC12326768

What OpenQuestion holds

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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.