ArticleResearch involvement and engagement2024
Patient and public involvement and engagement: Do we need an 'ethical anchor'?
Article in Research involvement and engagement, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 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
16 citing papers in PubMed.
- Involving Parents in Prevention: A Case Example of Research and Intervention Development to Improve Financial Well-Being Support.Journal of prevention (2022) · 2026Article
- Your voice matters: using participatory film to engage people with chronic pain in public involvement and research.Research involvement and engagement · 2026Article
- An Evidence-Based AI Virtual Assistant for Young People With Attention Deficit Hyperactivity Disorder: Co-Design and Prototype Development.JMIR formative research · 2026Article
- Reflections on public involvement: learning from a personalised balance training intervention for individuals with chronic obstructive pulmonary disease.Research involvement and engagement · 2026Article
- Challenges and facilitators for meaningful and impactful stakeholder engagement in global health research.Journal of global health · 2026Article
- Reducing tokenism in patient and public involvement by integrating the Gothenburg person-centred care framework, relational bridges and impact log - a co-produced position paper.Research involvement and engagement · 2026Article
- Bioethics committee approvals in multicentre laryngology research across Europe: the European Laryngological Society's consensus on legal basis and quality assurance.European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery · 2026Article
- Embedding Patient and Public Engagement in a Cancer Project: Protocol for a Qualitative Study.JMIR research protocols · 2026Article
- Identifying aspects of palliative and end-of-life care that are most important to people with lived experience and can be measured using routine data: a series of patient and public involvement workshops.Journal of patient-reported outcomes · 2026Article
- No Ethics Needed? Towards an Ethics of Care for Public and Patient Involvement and Engagement.Health expectations : an international journal of public participation in health care and health policy · 2026Review
- Layering perspectives: a structured approach to meaningful patient and public involvement and engagement in the RETURN dental trial.Research involvement and engagement · 2026Article
- Benefits of public engagement in research and barriers to participation: a UK-based survey of academic scientists and support staff including international respondents.Immunology and cell biology · 2026Article
- Patient and Public Involvement and Engagement within a UK blood cancer cohort: a case study.Research involvement and engagement · 2026Article
- 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
- Ethical integration of citizen science and youth participatory action research: insights from the YouthChronic project.Research involvement and engagement · 2025Article
- Enhancing patients' role in scientific writing: insights from a global participatory approach with people with multiple sclerosis.Research involvement and engagement · 2025Article
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
backgroundWorking alongside patients and the public to shape and engage with research, Patient and Public Involvement and Engagement (PPIE), facilitates more impactful research outcomes. The UK Standards for Public Involvement provides a framework for conducting PPIE; however, they do not refer directly to ethical conduct. Research ethics involve the moral principles that govern researchers' actions, and securing ethical approval from a research ethics committee is necessary before starting a study. Nonetheless, in the UK, ethical approval is not needed for PPIE activities. MAIN TEXT: By its very nature, PPIE requires interaction with patients and public about their lived/living experience of often sensitive and emotional topics. We need to consider ethical principles of PPIE, and potential for harm to those involved. The authors call for ethics guidance to be included in the UK Standards for Public Involvement and discuss this with regards to (a) emotional risk (b) physical risk (c) confidentiality and personal data (d) support versus paternalism (e) marginalisation and (f) building and maintaining healthy relationships.
conclusionThe argument presented here has been informed by the authors' own experiences in topic areas ranging from transplantation, respiratory disease and health inequalities to women living with domestic abuse, and suggests that although requiring ethical approval for PPIE would be a step too far, and stifle research progress, PPIE needs to be conducted with an 'ethical anchor' to facilitate ethical practice and mitigate risk.
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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.