ArticleResearch involvement and engagement2019
Learning as an outcome of involvement in research: what are the implications for practice, reporting and evaluation?
Article in Research involvement and engagement, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 100 papers, 2 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
100 citing papers in PubMed, 2 syntheses or guidelines pooled 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
- Participatory approaches in the development of health interventions for migrants: a systematic review.BMJ open · 2021Pooled it
- A report on parent involvement in planning a randomised controlled trial in neonatology and lactation - insights for current and future research.International breastfeeding journal · 2022Trial
- 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
- "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
- Do Androids Dream of Lived Experience? Navigating Risks, Uncertainty, and Best Practices Around Generative AI in Patient and Public Involvement and Engagement.Journal of medical Internet research · 2026Article
- Expertise or representation: What gives people with lived experience authority and legitimacy in involvement in 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
- 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
- "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
- Patient and Public Involvement (PPI) in lab-based research. What is the added value? Reflections from a researcher and public contributor perspective.Research involvement and engagement · 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 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
- PPI in LifeMap-QUEST: an example of co-producing videos in different languages to support inclusion in a clinical study.Research involvement and engagement · 2026Article
- Evaluation and lessons learned regarding Public Involvement: a panel advising on an Alzheimer's disease and related dementia cohort study.Research involvement and engagement · 2026Article
- Putting FUN into involvement: feedback user needs in the design of a mobile phone app for people with long-term conditions.Research involvement and engagement · 2026Article
- Patient and public involvement in musculoskeletal pain research: using mutual learning to improve research quality.Therapeutic advances in musculoskeletal disease · 2026Review
- What approaches are used to facilitate people from under-served communities getting involved with health research? A public contributor led review.Research involvement and engagement · 2025Review
- 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
40 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
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Public involvement in research has evolved over the last two decades in a culture dominated by the principles of evidence-based medicine. It is therefore unsurprising that some researchers have applied the same thinking to involvement, particularly to involvement in research projects. This may explain why they tend to conceptualise involvement as an intervention, seek to evaluate its impact in the same way that treatments are tested, highlight the need for an evidence-base for involvement, and use the language of research to describe its practice and report its outcomes. In this article we explore why this thinking may be unhelpful. We suggest an alternative approach that conceptualises involvement as 'conversations that support two-way learning'. With this framing, there is no 'method' for involvement, but a wide range of approaches that need to be tailored to the context and the needs of the individuals involved. The quality of the interaction between researchers and the public becomes more important than the process. All parties need to be better prepared to offer and receive constructive criticism and to engage in constructive conflict that leads to the best ideas and decisions. The immediate outcomes of involvement in terms of what researchers learn are subjective (specific to the researcher) and unpredictable (because researchers don't know what they don't know at the start). This makes it challenging to quantify such outcomes, and to carry out comparisons of different approaches. On this basis, we believe obtaining 'robust evidence' of the outcomes of involvement in ways that are consistent with the values of evidence-based medicine, may not be possible or appropriate. We argue that researchers' subjective accounts of what they learnt through involvement represent an equally valid way of knowing whether involvement has made a difference. Different approaches to evaluating and reporting involvement need to be adopted, which describe the details of what was said and learnt by whom (short term outcomes), what changes were made as a result (medium term outcomes), and the long-term, wider impacts on the research culture and agenda. Sharing researchers' personal accounts may support wider learning about how involvement works, for whom and when.
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.