ArticleBMJ open2014
Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study.
Article in BMJ open, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 73 papers, 1 of them a synthesis 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
73 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Pooled it
- The impact of Patient and Public Involvement in the SlowMo study: Reflections on peer innovation.Health expectations : an international journal of public participation in health care and health policy · 2022Trial
- Trial
- Adjusting the 15-method to Danish general practice: a participatory design approach.Scandinavian journal of primary health care · 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
- "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 Stakeholder Involvement in Intervention Implementation Studies: Systematic Evidence Synthesis With an Evidence Gap Map Approach.Evaluation & the health professions · 2026Review
- 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
- A Co-production Evaluation Tool Informed by Co-production Workshops for Use in Evidence Synthesis Contexts.Cochrane evidence synthesis and methods · 2026Article
- Navigating care together: developing a collaborative checklist to improve care for children with intellectual disabilities.Research involvement and engagement · 2025Article
- Article
- Consulting people who use cannabis to plan a regulatory trial on non-medical cannabis sales in pharmacies.Research involvement and engagement · 2025Article
- Frameworks Used to Engage Postsecondary Students in Campus Mental Health Research: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Patient and public involvement in neonatal research - experiences and insights from parents and researchers.Research involvement and engagement · 2025Article
- Implementation of patient and public involvement and engagement (PPIE) for the therapies for long COVID in non-hospitalised individuals (TLC) project.Research involvement and engagement · 2024Article
- Establishment of a patient and public involvement and engagement group to support clinical trials in Pakistan: Initial lessons learned.Research involvement and engagement · 2024Article
- Exploring Consumers' Motivations and Experiences of Engaging as Partners in Cancer Research.The patient · 2024Article
- A rapid review of guidelines on the involvement of adolescents in health research.Health expectations : an international journal of public participation in health care and health policy · 2024Review
- 'It's Powerful' The impact of involving children and young people in developing paediatric research agendas: A qualitative interview study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Lessons learned in measuring patient engagement in a Canada-wide childhood disability network.Research involvement and engagement · 2024Article
13 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
objectiveTo explore areas of consensus and conflict in relation to perceived public involvement (PI) barriers and drivers, perceived impacts of PI and ways of evaluating PI approaches in health and social care research.
backgroundInternationally and within the UK the recognition of potential benefits of PI in health and social care research is gathering momentum and PI is increasingly identified by organisations as a prerequisite for funding. However, there is relatively little examination of the impacts of PI and how those impacts might be measured.
designMixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project. SAMPLE: Clinical and non-clinical academics, members of the public, research managers, commissioners and funders.
findingsThis study found high levels of consensus about the most important barriers and drivers to PI. There was acknowledgement that tokenism was common in relation to PI; and strong support for the view that demonstrating the impacts and value of PI was made more difficult by tokenistic practice. PI was seen as having intrinsic value; nonetheless, there was clear support for the importance of evaluating its impact. Research team cohesion and appropriate resources were considered essential to effective PI implementation. Panellists agreed that PI can be challenging, but can be facilitated by clear guidance, together with models of good practice and measurable standards.
conclusionsThis study is the first to present empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived PI barriers and drivers, perceived impacts of PI and the need to evaluate PI. As such it further contributes to debate around best practice in PI, the potential for tokenism and how best to evaluate the impacts of PI. These findings have been used in the development of the Public Involvement Impact Assessment Framework (PiiAF), an online resource which offers guidance to researchers and members of the public involved in the PI process.
Indexed as
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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.