ArticleThe Journal of medicine and philosophy2023
Democratic Justifications for Patient Public Involvement and Engagement in Health Research: An Exploration of the Theoretical Debates and Practical Challenges.
Article in The Journal of medicine and philosophy, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 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
30 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The Ethics of Human Embryo Editing via CRISPR-Cas9 Technology: A Systematic Review of Ethical Arguments, Reasons, and Concerns.HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues · 2025Pooled it
- Evaluating Meaningful Patient and Public Involvement in Intensive Care Research-A PEIRS-22 Survey.Nursing in critical care · 2026Article
- Bridging Lived and Expert Experience: A Qualitative Study Exploring Lived-Experience Experts' and Researchers' Experiences of Public Engagement in Cancer Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Engaging Parents in Healthcare Interventions to Improve Paediatric Patient Safety: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Engaging With a Participatory Research Team: Evaluation of Involving Older Co-Researchers With Experience of Falls in the SeFallED Project.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Conceptualising and operationalising 'patient and public involvement' (PPI) and 'responsible research and innovation' (RRI) in youth mental health research: a scoping review.Research involvement and engagement · 2026Review
- A case study of patient and public involvement in sepsis genomics research.Research involvement and engagement · 2026Article
- Put purpose before process: lessons from evaluating patient involvement in governance structures in health research organisations.Research involvement and engagement · 2026Article
- Expertise or representation: What gives people with lived experience authority and legitimacy in involvement in research?Research involvement and engagement · 2026Article
- Tensions in patient involvement and engagement in health research and development: a qualitative interview study with key actors.Research involvement and engagement · 2026Article
- Democratising health and social care research through long-term public involvement and engagement: a qualitative process evaluation of the Community Research and Engagement Network (CoREN).Research involvement and engagement · 2026Article
- Embedding Patient and Public Engagement in a Cancer Project: Protocol for a Qualitative Study.JMIR research protocols · 2026Article
- The PRO-CAR-T™ study: achieving excellence in patient and public involvement and engagement.Journal of patient-reported outcomes · 2026Article
- Layering perspectives: a structured approach to meaningful patient and public involvement and engagement in the RETURN dental trial.Research involvement and engagement · 2026Article
- Article
- Writing Patient Engagement Effectively Into Grant Applications: Practical Tips for Grant Writers.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- The importance of partnership in chronic pain - co-creation of tomorrow's pain care by working together in research, implementation, and knowledge dissemination.Frontiers in pain research (Lausanne, Switzerland) · 2026Article
- Patient and Public Involvement with Forced Migrants: An Empirical Exploration of Ethical Issues.Journal of bioethical inquiry · 2025Article
- Targeting everyday decision makers in research: early career researcher and patient and public involvement and engagement collaboration in an AI-in-healthcare project.Research involvement and engagement · 2025Article
- Gaps in the Engagement of People With Lived and Living Experience and Caregivers in Mental Health and Substance Use Health Research: A Qualitative Study of Untapped Potential.Health expectations : an international journal of public participation in health care and health policy · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic. Bringing this function to the fore and locating PPIE in the wider context of changes in contemporary forms of democratic engagement provides greater conceptual clarity over what PPIE in research should be trying to achieve. Conceptualizing PPIE as a form of democratization has a number of benefits. First, theories of what are appropriate, normatively justifiable and workable criteria for PPIE practices can be developed, and this can provide tools to address the legitimacy and accountability questions that have troubled the PPIE community. Second, this work can be used to form the basis of a research agenda to investigate how PPIE in health research operates, and how it can facilitate and/or improve democratic processes in health research.
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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.