SynthesisHealth expectations : an international journal of public participation in health care and health policy2019
Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.
Synthesis in Health expectations : an international journal of public participation in health care and health policy, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 559 papers, 4 of them syntheses that pooled 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.
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.
Who cites it
559 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- A call to action: more parent-child interaction research within daily routines!Journal of deaf studies and deaf education · 2026Pooled 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
- Informing prostate cancer screening policy makers in the European Union: lessons from cancer screening governance and policymaking.European journal of public health · 2025Pooled it
- Stakeholder engagement in healthcare research in India - A systematic review.Health research policy and systems · 2025Pooled it
- Enhancing translation capacities of COVID-19 researchers through interdisciplinary collaboration: empathy, awareness, and action.International journal of qualitative studies on health and well-being · 2026Article
- Virtual Reality Therapy Assistants for Adjunctive Cue Exposure Training in the Treatment of Alcohol Use Disorder (VITAACue-AUD): Protocol for a Technical Feasibility Study.JMIR research protocols · 2026Article
- Preparing the next generation of health researchers by embedding public and patient engagement into Canadian graduate education: reflections from graduate students.Research involvement and engagement · 2026Article
- Valuing student voices: a qualitative study on fair recognition and compensation practices for student partners in mental health research.Research involvement and engagement · 2026Article
- Where are the Public in Prevention Science? A Scoping Review of Public Involvement in the Development and Evaluation of Family-Based Prevention Interventions.Journal of prevention (2022) · 2026Review
- Aligning Priorities of Surgeons and Patients Regarding Obesity and Joint Replacement: Recommendations of the Advisory Committee Codesigning Solutions Regarding Obesity and Arthroplasty Consensus Working Group.Arthroplasty today · 2026Article
- Creating shared vision in patient partnered research: a case example of patient engagement from the PAVE project (producing an arthritis value framework with economic evidence: paving the way for rare childhood disease).Research involvement and engagement · 2026Article
- Women's involvement and engagement in climate and health research in two Global South countries - Indonesia and Malaysia: barriers and facilitators.Research involvement and engagement · 2026Article
- Referral delays in metastatic breast cancer care: barriers and facilitators across a fragmented pathway.BMJ open quality · 2026Article
- Article
- Patient and Public Involvement and Engagement (PPIE) in methodological research: exploring challenges, tensions and learning from the perspectives of PPIE and researchers in the Realist Economic Evaluation Methods (REEM) study.Research involvement and engagement · 2026Article
- The role of lived and living experience in evidence-based decision-making in suicide prevention.Health promotion international · 2026Article
- Meaningful engagement of lived experience in diabetes research and health service improvement: A rapid review of barriers to and enablers for community involvement among adults with type 2 diabetes.Diabetic medicine : a journal of the British Diabetic Association · 2026Review
- Enablers to successful patient and public involvement in Palliative Care Research: Qualitative perspectives of public members and Program Coordinators.Palliative medicine · 2026Article
- Learning from peer researcher-facilitated surveys: a narrative review on involvement, training and evaluation.Research involvement and engagement · 2026Article
- Compensating patient partners on health research teams: a qualitative descriptive study of barriers, facilitators, and implications for equity, diversity, and inclusion in Canadian patient-oriented research.Research involvement and engagement · 2026Article
499 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
7 authors.
Funding
Abstract
backgroundNumerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous.
objectivesTo 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.
resultsOur 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.
conclusionThe 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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What OpenQuestion holds
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.