ArticleHealth expectations : an international journal of public participation in health care and health policy2019
"About sixty per cent I want to do it": Health researchers' attitudes to, and experiences of, patient and public involvement (PPI)-A qualitative interview study.
Article 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 104 papers, 3 of them syntheses that pooled it.
What it found
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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.
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Who cites it
104 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Facilitators of and barriers to patient and public involvement in mental health research within university settings: a systematic review and meta-synthesis.Psychological medicine · 2025Pooled it
- Public involvement in Australian clinical trials: A systematic review.Clinical trials (London, England) · 2024Pooled it
- Meaningful patient and public involvement in digital health innovation, implementation and evaluation: A systematic review.Health expectations : an international journal of public participation in health care and health policy · 2022Pooled it
- Evaluating the utility of a patient and public involvement and engagement (PPIE) end-of-trial event to re-engage with cell-based therapy participants.Regenerative medicine · 2025Trial
- "It gives me confidence and value": evaluating All_Ears@UoS patient and public involvement and engagement (PPIE) group three years on.Research involvement and engagement · 2026Article
- Building Sustainable Patient Involvement in Rare Condition Research.Molecular genetics & genomic medicine · 2026Article
- A case study of patient and public involvement in sepsis genomics research.Research involvement and engagement · 2026Article
- "We don't get asked": including people with workforce experience as public contributors in a workforce-related study about homecare work towards the end-of-life.Research involvement and engagement · 2026Article
- 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
- "If the funders said to me that I have to dress in orange, I would dress in orange": findings from qualitative interviews on researchers' experiences of public involvement.Research involvement and engagement · 2026Article
- Exploring staff and students' understanding and experience of Public and Patient Involvement (PPI) in an Irish University.Research involvement and engagement · 2026Article
- Perception of physiotherapy researchers about patient and public involvement in health research design and planning in Nigeria.BMC health services research · 2026Article
- A critical reflective analysis of patient and public involvement in a programme of heart failure with preserved ejection fraction research.Research involvement and engagement · 2026Article
- Development of the RIPPLES framework for patient and public involvement in rapid evidence syntheses.Research involvement and engagement · 2026Article
- Public and patient involvement: exploring public partnership in pathogen whole-genome sequencing research and its data visualisation.Microbial genomics · 2026Article
- Including patient and public contributors on clinical trial Independent Data Monitoring Committees (IDMCs).Trials · 2026Article
- An international cross-sectional study of dementia researchers' own perspectives on patient and public involvement.Scientific reports · 2025Article
- Conceptualizing culture change as an impact metric. A scoping review and abductive thematic analysis of culture-related outcomes from patient and public involvement in healthcare and health research.Research involvement and engagement · 2025Review
- Patient and public involvement and engagement in methodology research: process, experiences, and recommendations from the SPIRIT- and CONSORT-Surrogate project.Research involvement and engagement · 2025Article
- Article
44 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
backgroundFunders, policy-makers and research organizations increasingly expect health researchers in the UK to involve patients and members of the public in research. It has been stated that it makes research "more effective, more credible and often more cost efficient." However, the evidence base for this assertion is evolving and can be limited. There has been little research into how health researchers feel about involving people, how they go about it, how they manage formal policy rhetoric, and what happens in practice.
objectiveTo explore researchers' experiences and perceptions of patient and public involvement (PPI).
methodsSemi-structured interview study of 36 health researchers (both clinical and non-clinical), with data collection and thematic analysis informed by the theoretical domains framework.
resultsIn the course of our analysis, we developed four themes that encapsulate the participants' experiences and perceptions of PPI. Participants expressed ambivalence, cynicism and enthusiasm about PPI, an activity that creates emotional labour, which is both rewarding and burdensome and requires practical and social support. It is operationalized in an academic context influenced by power and incentives. DISCUSSION AND
conclusionsResearchers' experiences and attitudes towards patient and public involvement are a key factor in the successful embedding of involvement within the wider research culture. We call for a culture change that supports the development of effective organizational approach to support involvement.
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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.