ArticleHealth expectations : an international journal of public participation in health care and health policy2021
Patients as partners in health research: A scoping review.
Article in Health expectations : an international journal of public participation in health care and health policy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 95 papers, 2 of them syntheses that pooled it.
What it found
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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.
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Who cites it
95 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- How Do Participatory Citizenship Models Inform Co-production in Health Research? A Systematic Review.Health expectations : an international journal of public participation in health care and health policy · 2025Pooled it
- Evaluation of research co-design in health: a systematic overview of reviews and development of a framework.Implementation science : IS · 2024Pooled it
- PROGRESS: A patient-centered engagement infrastructure and multi-level approach to enrich diversity, equity, and inclusion in a national randomized online behavioral pain treatment study.The journal of pain · 2025Trial
- Trial
- Promising Patient-Engagement Practices Used by National Research Networks at the US Veterans Health Administration: Perspectives of Veterans, Staff, and Research Leaders.Learning health systems · 2026Article
- Evolving Roles for Patients as Partners in a National Kidney Health Research Network: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Engaging patient communities in intracranial neuroscience research.medRxiv : the preprint server for health sciences · 2026Article
- Patients as Partners in Perinatal Health Research: A Scoping Review.BJOG : an international journal of obstetrics and gynaecology · 2026Article
- Development of a Diabetes Rural Stakeholder Research Team and Patient-Centered Research Agenda.OTJR : occupation, participation and health · 2026Article
- Article
- Patients as Partners in Sickle Cell Disease Research in Africa: A Framework for Equitable Patient-Engaged Health Research.The patient · 2026Article
- Who CaREs - We do: Development of a community and researcher engagement program in translational medicine.Research involvement and engagement · 2026Article
- Patient and Public Involvement and Engagement within a UK blood cancer cohort: a case study.Research involvement and engagement · 2026Article
- First Nation and Métis Needs Assessment for Pre-Surgical Rehabilitation and Education of Hip and Knee Total Joint Replacements in Saskatchewan: Uplifting Indigenous Knowledges.Health services insights · 2026Article
- Methods of Engaging Interest-Holders in Healthcare Evidence Syntheses: A Scoping Review.Cochrane evidence synthesis and methods · 2026Review
- Article
- Involving consumers in health research through the use of consumer panels: a scoping review.Research involvement and engagement · 2025Review
- Co-developing an intervention to facilitate safe and early transition to neonatal home care for very preterm infants: a mixed-method study evaluating the impact of patient and public involvement.Research involvement and engagement · 2025Article
- Development and validation of the UserInvolve comprehensive toolkit for evaluating co-production in research: A guiding resource for researchers.Research involvement and engagement · 2025Article
- A call for transparency, improved reporting, and interpretation of trials using surrogate end points in cardiac electrophysiology.Heart rhythm · 2025Review
35 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe role of patient involvement in health research has evolved over the past decade. Despite efforts to engage patients as partners, the role is not well understood. We undertook this review to understand the engagement practices of patients who assume roles as partners in health research.
methodsUsing a recognized methodological approach, two academic databases (MEDLINE and EMBASE) and grey literature sources were searched. Findings were organized into one of the three higher levels of engagement, described by the Patient and Researcher Engagement framework developed by Manafo. We examined and quantified the supportive strategies used during involvement, used thematic analysis as described by Braun and Clarke and themed the purpose of engagement, and categorized the reported outcomes according to the CIHR Engagement Framework.
resultsOut of 6621 records, 119 sources were included in the review. Thematic analysis of the purpose of engagement revealed five themes: documenting and advancing PPI, relevance of research, co-building, capacity building and impact on research. Improved research design was the most common reported outcome and the most common role for patient partners was as members of the research team, and the most commonly used strategy to support involvement was by meetings.
conclusionThe evidence collected during this review advanced our understanding of the engagement of patients as research partners. As patient involvement becomes more mainstream, this knowledge will aid researchers and policy-makers in the development of approaches and tools to support engagement. PATIENT/USER INVOLVEMENT: Patients led and conducted the grey literature search, including the synthesis and interpretation of the findings.
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Registered trials
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.