Evidence map›Paper›PMID 40629409›Full record

ReviewResearch involvement and engagement2025

How are patient partners involved in health service research? A scoping review of reviews.

Sarah Cecilie Tscherning, Annesofie Lunde Jensen, Hilary Louise Bekker, Tina Wang Vedelø, Jeanette Finderup, Gitte Susanne Rasmussen, Jakob Appel Østergaard, Flemming Otto Jensen, Lotte Ørneborg Rodkjaer

Abstract readReview
In one paragraph

Review in Research involvement and engagement, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing 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

8 citing papers in PubMed.

  1. Article
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  8. Review
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.

Sarah Cecilie TscherningDepartment of Public Health, Aarhus University, Aarhus, Denmark. sct@ph.au.dk.ORCID http://orcid.org/0000-0003-2285-6603
Annesofie Lunde JensenDepartment of Clinical Medicine, Aarhus University, Aarhus, Denmark.ORCID http://orcid.org/0000-0003-2025-6663
Hilary Louise BekkerLeeds Unit for Complex Intervention Development (LUCID) and Leeds Institute of Health Sciences, School of Medicine, University of Leeds, Leeds, UK.ORCID http://orcid.org/0000-0003-1978-5795
Tina Wang VedeløDepartment of Public Health, Aarhus University, Aarhus, Denmark.ORCID http://orcid.org/0000-0001-9181-9000
Jeanette FinderupDepartment of Clinical Medicine, Aarhus University, Aarhus, Denmark.ORCID http://orcid.org/0000-0003-2646-0227
Gitte Susanne RasmussenDepartment of Dermatology and Venerology, Aarhus University Hospital, Aarhus, Denmark.ORCID http://orcid.org/0000-0003-2853-6774
Jakob Appel ØstergaardDepartment of Clinical Medicine, Aarhus University, Aarhus, Denmark.ORCID http://orcid.org/0000-0002-9877-5327
Flemming Otto JensenPatient partner, Aarhus, Denmark.
Lotte Ørneborg RodkjaerDepartment of Public Health, Aarhus University, Aarhus, Denmark.ORCID https://orcid.org/0000-0003-1570-2120

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundIncluding patients and next of kin as partners in research can help promote the development and dissemination of results that are inclusive, usable and relevant to health service settings. However, the impact of such involvement remains largely anecdotal, necessitating research to identify methods for achieving meaningful involvement.

objectivesThe aim was to examine how patient partners are involved in research across health service settings by addressing three objectives: (1) How are patient partners involved in the research process? (2) What is the impact of involving patient partners in research? (3) What defines effective patient partner involvement in research?

methodsWe conducted a scoping review by searching five databases (Embase, Scopus, MEDLINE, CINAHL, PsycINFO) and grey literature. Published reviews within health service settings examining patient partner involvement were included. Protocol papers and reviews on patient involvement in treatment and care were excluded. The review adhered to Arksey and O’Malley’s methodological framework and followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Checklist.

resultsA total of 124 reviews were included. Most reviews have been published after 2014, primarily from the United Kingdom, Canada and the United States of America. Patient partners were involved with consultation and collaboration approaches in different stages of the research process, including identifying and prioritising (n = 49), designing (n = 57), managing (n = 40), undertaking (n = 53) and disseminating (n = 51) and less in commissioning (n = 11), implementing (n = 6) and evaluating impact (n = 17). Impact reporting varied, with few reviews (n = 11) explicitly defining ‘impact’ and its related concepts. Sixteen key enablers for effective patient partner involvement were identified. The most reported enablers included partnerships built on trust and inclusive communication (n = 56), training and support for patient partners (n = 53), flexibility (n = 48) and adequate resources (n = 45).

conclusionA significant gap exists in defining and measuring patient partner involvement. Adequate resources and training are essential for furthering trust-based, inclusive partnerships between researchers and patient partners. Future research should prioritise improving impact assessment, addressing power imbalances and refining best practices to enhance effective involvement. PATIENT AND PUBLIC CONTRIBUTION: Two authors contributed with lived experience as patients and next of kin. Four patient partners were consulted about the results, one of whom coauthored this scoping review.

Indexed as

Health services researchPatient and public involvementPatient engagementPatient involvementPatient participationPatient partnerScoping review

Identifiers

PMID40629409
PMCPMC12239317

What Socratic 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 Socratic graph.