ArticleHealth expectations : an international journal of public participation in health care and health policy2026
Defining Patient and Public Involvement and Engagement Tasks in Health Data Research: A Consensus Study.
Article in Health expectations : an international journal of public participation in health care and health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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
2 citing papers in PubMed.
- Patient and public involvement and engagement in co-designing guidance for mental health professionals supporting neurodivergent children and young people in child and adolescent mental health services.Research involvement and engagement · 2026Article
- Defining Patient and Public Involvement and Engagement Tasks in Health Data Research: A Consensus Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
Abstract
backgroundPatient and public involvement and engagement (PPIE) is essential throughout the research cycle, but a one-size-fits-all approach does not suit all study types. Health data research presents several unique challenges, including ensuring data transparency and security. Thus, PPIE guidance should ideally define specific tasks to reduce the likelihood of tokenistic involvement. We therefore aimed to develop actionable, task-focused guidance for PPIE in health data research.
methodsWe used a consensus development process. We generated a list of potential PPIE tasks in health data research from existing literature informed by discussion with expert witnesses. We convened a consensus panel of nine members, comprising PPIE participants with varying experiences of PPIE and data research, PPIE professionals and health researchers. The panel first rated their agreement with tasks independently online and then discussed disagreements during an in-person meeting, after which all tasks were re-rated. We calculated median scores and refined a final set of tasks.
resultsWe identified 29 tasks across six domains of the research cycle: (1) prioritising and commissioning research; (2) planning research projects; (3) delivering research; (4) interpreting research; (5) sharing and using research knowledge; and (6) evaluating research. Consensus was reached on 25 tasks in the first round. Initial disagreements, particularly around planning research projects and monitoring data privacy, were resolved following structured discussions. Consensus and support were achieved for all 29 tasks following the second round.
conclusionsPPIE participants expressed a strong desire to be involved in all aspects of the research cycle. We offer a framework of actionable PPIE tasks for health data research and invite further development and evaluation. PATIENT AND PUBLIC CONTRIBUTIONS: PPIE participants were involved shaping the project idea and design, draughting a list of PPIE tasks, rating and discussing the importance of PPIE tasks and co-writing the publication.
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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.