ArticleBMC medicine2020
Patient and public involvement in research: from tokenistic box ticking to valued team members.
Article in BMC medicine, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 92 papers, 5 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
92 citing papers in PubMed, 5 syntheses or guidelines pooled it.
- Perceptions of robot-assisted arthroplasty among patients and the public : a scoping review.Bone & joint open · 2026Pooled it
- How populist-aligned views affect receipt of non-COVID-19-related public health interventions: a systematic review of quantitative studies.BMC public health · 2025Pooled it
- Evaluating Process and Outcomes of Public Involvement in Applied Health and Social Care Research: A Rapid Systematic Review.Health expectations : an international journal of public participation in health care and health policy · 2025Pooled it
- Patient and public involvement in HIV research: a mapping review and development of an online evidence map.Journal of the International AIDS Society · 2024Pooled it
- A Systematic Review of Dementia Research Priorities.Journal of geriatric psychiatry and neurology · 2024Pooled it
- Embedding patient and public involvement in dementia research: Reflections from experiences during the 'Journeying through Dementia' randomised controlled trial.Dementia (London, England) · 2022Trial
- From tokenism to togetherness: the V.O.I.C.E. framework for safety-centred lived experience involvement in perinatal and parenting research.Research involvement and engagement · 2026Article
- Partnering with patients and the public in the clinical trials ecosystem: a decade of lessons learned and shared.BMJ open · 2026Review
- Engagement in women's health: a history.Research involvement and engagement · 2026Article
- Public involvement and co-design of longitudinal studies of sleep health alongside young people with rare genetic conditions.Research involvement and engagement · 2026Article
- Evaluation of the Implementation and Contribution of Patient Partners on a Steering Committee at a University Hospital in the Province of Québec, Canada.Healthcare (Basel, Switzerland) · 2026Article
- What added value does Patient and Public Involvement (PPI) in oncology research bring to cancer patients and what are the challenges in realizing it? A mixed-methods cross-sectional study in four PPI groups in Flanders (Belgium).Research involvement and engagement · 2026Article
- Structured patient and public involvement programme development in low- and middle-income country health research: a scoping review of evidence gaps and a framework for future practice.Research involvement and engagement · 2026Review
- Patient and public involvement in health and social care doctoral research: recommendations co-produced by doctoral researchers, public contributors, and a public involvement coordinator.Research involvement and engagement · 2026Article
- Lessons learned from including Patient and Public Involvement members throughout research projects in Tic Disorder research.Research involvement and engagement · 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
- Reflections on 10 years of research capacity building.NPJ primary care respiratory medicine · 2026Article
- Development of a Patient and Carer Advisory Board to Co-Design Health Services Research for the Quality of Care of People With Dementia.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Consortium-Based Patient and Public Involvement and Engagement for Long COVID Research: A Pirit-Focused Impact Evaluation of the PHOSP-COVID Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Evaluating Patient and Public Involvement and Engagement Activity Within the 3DPiPPIn Trial: A Qualitative Exploration of Contributors' Perspectives on Their Impact.Health expectations : an international journal of public participation in health care and health policy · 2026Article
32 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
9 authors.
Funding
Abstract
backgroundPatient and public involvement (PPI) in research envisages a relationship built throughout the lifespan of a research project between academics, clinicians and PPI colleagues in order to inform, plan, execute and, in due course, disseminate and translate research. To be meaningful, all stakeholders need to actively engage in this exchange of expertise. However, despite some funders requiring PPI plans to be included in grant applications, there remains a gap between what is expected and what is delivered. MAIN BODY: As an exemplar, we reflect on how, in the Asthma UK Centre for Applied Research (AUKCAR), we set out to create a supportive, organised environment with the overarching value of 'keeping patients at the heart of everything we do'. The key has been in planning and creating a suitably funded organisational infrastructure with dedicated PPI researchers along with the development of and expectation to abide by an agreed set of norms and values. Specifically, expecting AUKCAR PhD students and early career researchers to engage with PPI has established a working mode that we hope will last. Regular interactions and proactive Patient Leads increase PPI network cohesion.
conclusionWith adaptation, the AUKCAR PPI model can be translated to international contexts.
Indexed as
Identifiers
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.