Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot
Open accessAbstract
Background: Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives: To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy: Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria: Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health‐related research. Data extraction and synthesis: Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co‐design workshops, we tested evidence‐based resources based on the review findings. Results: Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power‐focused; priority‐setting; study‐focused; report‐focused; and partnership‐focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence‐based facilitator notes for a “build your own framework” co‐design workshop. Conclusion: The plethora of frameworks combined with evidence of limited transferability suggests that a single, off‐the‐shelf framework may be less useful than a menu of evidence‐based resources which stakeholders can use to co‐design their own frameworks.
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Addressing barriers to PPIE inclusivity requires context-sensitive, flexible approaches that respond to differences between groups, such as taking activities into community settings rather than expecting contributors to attend formal meetings in academic environments.
“Addressing these barriers requires context-sensitive, flexible approaches [22] that respond to differences between groups, such as taking activities into community settings rather than expecting contributors to attend formal meetings in academic environments [32].”
From Layering perspectives: a structured approach to meaningful patient and public involvement and engagement in the RETURN dental trial (2026) · cites this paper as [22]
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Experimental — accuracy not yet measuredSystematic and deliberate theory-building in youth engagement in health research has been limited.
“Despite the rise in popularity and continued growth of youth engagement in health research, systematic and deliberate theory‐building has been limited.”
From A systematic review of theories, models and frameworks used for youth engagement in health research (2024) · cites this paper as [60]
The Discussion (Summary of principal findings; page unavailable) says that many frameworks for patient and lay involvement in health research were developed using theoretical principles. It does not assess theory-building specifically in youth engagement. Searches for youth, young people, adolescents, children, and limited theory-building did not locate a passage addressing that claim. (LLM, conf=0.76)
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“56 60 – 62 Theoretical development is crucial to advance this field of study towards an effective ‘ science of engagement ’ , which can improve transparency, reliability and rigour in the research process.”
BackgroundEvaluating a tool to improve engagement and recruitment of under-served groups in trials
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Boyle, F. M., Horey, D., Dean, J. H., Loughnan, S., Ludski, K., Mead, J., Homer, C. S., de Wilde, D., Morris, J., & Flenady, V. J. (2020) · Women and Birth · doi:10.1016/j.wombi.2020.08.006 · Cited by 25 · see citing works
Lowers, V., Stanley, M., Hennessy, J., Morgan, E., Horsley, R., Vithlani, J., & Harris, R. V. (2026) · Research involvement and engagement · doi:10.1186/s40900-026-00857-w
- Authors
- Greenhalgh, T., Hinton, L., Finlay, T., Macfarlane, A., Fahy, N., Clyde, B., & Chant, A.
- Affiliations
- University of Oxford (GB)
- North Central London Academic Foundation Programme London UK
- Corresponding author
- Greenhalgh, Trisha
- Venue
- Health Expectations
- Publisher
- Wiley
- Published
- 2019-04-22
- Volume
- 22
- Issue
- 4
- Pages
- 785-801
- ISSN
- 1369-6513 (ISSN-L)
- 1369-7625
- PMC
- PMC6737756
- OpenAlex
- W2941496369
- Cited by
- 1,059
- References
- 90
- Citations by year
- 2026: 163 · 2025: 143 · 2024: 221 · 2023: 164 · 2022: 171 · 2021: 122 · 2020: 61 · 2019: 13
- FWCI
- 16.82
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Health Expectations (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
- Apollo (University of Cambridge) (submittedVersion, cc-by)
- Radar (Oxford Brookes University) (submittedVersion, cc-by)
- Apollo (cc-by)
- Funders
- National Institute for Health Research (BRC-1215-20008)
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
- Health Sciences › Health Professions › General Health Professions › Community Health and Development
- Keywords
- patient and public involvement, research framework, co-design, framework evaluation, health research collaboration, co-design workshops
- MeSH terms
- Empowerment, Community Participation, Group Processes, Humans, Patient Participation, Research
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