Evidence map›Paper›PMID 42369385›Full record

ArticleJournal of patient experience2026

Patient- and Public-Led Research - How Is It Defined and Practiced: A Scoping Review.

Ellen Wang, Linda Truong, Nejat Hassan, Erica Quershi, Khole Merry, Trinity Lowthian, Marisa Lin, Nelly D Oelke, Heather Gainforth, Janet Curran and 1 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of patient experience, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

11 authors.

Ellen WangDepartment of Physical Therapy, University of British Columbia, Vancouver, BC, Canada.ORCID https://orcid.org/0000-0001-7080-9946
Linda TruongDepartment of Physical Therapy, University of British Columbia, Vancouver, BC, Canada.
Nejat HassanDepartment of Physical Therapy, University of British Columbia, Vancouver, BC, Canada.
Erica QuershiFaculty of Medicine, University of British Columbia, Vancouver, BC, Canada.
Khole MerryDepartment of Physical Therapy, University of British Columbia, Vancouver, BC, Canada.
Trinity LowthianArthritis Patient Advisory Board of Arthritis Research Canada, Vancouver, BC, Canada.
Marisa LinDepartment of Physical Therapy, University of British Columbia, Vancouver, BC, Canada.
Nelly D OelkeSchool of Nursing, Faculty of Health and Social Development, University of British Columbia, Okanagan Campus, Kelowna, BC, Canada.
Heather GainforthInternational Collaboration on Repair Discoveries (ICORD), Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada.
Janet CurranSchool of Nursing, Faculty of Health, Dalhousie University, Halifax, NS, Canada.
Linda C LiDepartment of Physical Therapy, University of British Columbia, Vancouver, BC, Canada.ORCID https://orcid.org/0000-0001-6280-0511

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: Patient- and public-led research signals more than a redistribution of decision-making authority, positioning patients and public as key contributors of scholarly inquiry throughout the research process. Despite the growing awareness of patient- and public-led research endeavors, it is unclear how they are conducted. This scoping review aimed to synthesize how patient- and public-led research is defined and practiced in health research. Methods: Our scoping review was guided by the Arksey and O'Malley's framework (2005) and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR). A comprehensive search of health research databases and grey literature sources was conducted. Included studies were published in English and described how patients and public held final decision-making authority ( Results: Our search identified 4,723 records, of which 68 articles describing 62 studies met the inclusion criteria. Patient- and public-led research was described using terms including consumer-led, user-led, Indigenous-led; with only 14 (23%) studies offering an explicit definition. Our review identified three contexts in which patient- and public-led research occurred including: how research was carried out (operations), how decisions were made (governance), and how intellectual/experiential contributions from patients and public shaped research trajectories (accountability). Conclusion: By shifting the focus from involvement to leadership, our findings provide a foundation for more intentional design, meaningful support, and robust evaluation of patient- and public-led health research.

Indexed as

community based participatory researchEmpowerindigenous-led researchpatient- and public-led researchself-researchuser-led research

Identifiers

PMID42369385
PMCPMC13309659

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.