ArticleResearch involvement and engagement2024
Public involvement and engagement in scientific research and higher education: the only way is ethics?
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 26 papers.
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
26 citing papers in PubMed.
- Where are the Public in Prevention Science? A Scoping Review of Public Involvement in the Development and Evaluation of Family-Based Prevention Interventions.Journal of prevention (2022) · 2026Review
- 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
- Your voice matters: using participatory film to engage people with chronic pain in public involvement and research.Research involvement and engagement · 2026Article
- Embedding Patient and Public Engagement in a Cancer Project: Protocol for a Qualitative Study.JMIR research protocols · 2026Article
- When xenotransplantation enters the conversation: reflections on public involvement in research on a novel and controversial technology.Research involvement and engagement · 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
- The PRO-CAR-T™ study: achieving excellence in patient and public involvement and engagement.Journal of patient-reported outcomes · 2026Article
- Real-Time Cardiac Biofeedback Intervention: Experiences of Patient and Public Involvement in a Randomized Controlled Trial.Journal of participatory medicine · 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
- Combining Listening Cafés and a Games-Based Co-Design Approach for Public Involvement With Underserved Communities: A Methodology and Lessons Learned From Health Research.Health expectations : an international journal of public participation in health care and health policy · 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 and Engagement within a UK blood cancer cohort: a case study.Research involvement and engagement · 2026Article
- Doing community involvement care-fully: using an ethic of care to guide involvement in research on women's health after pregnancy complications and loss.Research involvement and engagement · 2025Article
- Podcasts as a platform for sharing and disseminating experiences and expertise between young adults with cancer and radiotherapy researchers.Research involvement and engagement · 2025Article
- Listening to Women's Voices: A Patient and Public Involvement Exercise Exploring Vulval Reconstructive Surgery for UK Women With Female Genital Mutilation (FGM).Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Decoding Aging through iPSC Reprogramming: Advances and Challenges.Aging and disease · 2025Review
- A practical guide to public involvement with children and young people in dental research.British dental journal · 2025Article
- Article
- Exploring the role of Patient and Public Involvement in Implementation Research using the Study of Implementation of Midwifery Continuity of Carer (SIMCA).NIHR open research · 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
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundInvolving and engaging the public in scientific research and higher education is slowly becoming the norm for academic institutions in the United Kingdom and elsewhere. Driven by a wide range of stakeholders including regulators, funders, research policymakers and charities public involvement and public engagement are increasingly seen as essential in delivering open and transparent activity that is relevant and positively impacts on our society. It is obvious that any activities involving and engaging members of the public should be conducted safely and ethically. However, it is not clear whether conducting activities ethically means they require ethical approval from a research ethics committee. MAIN BODY: Although there is some guidance available from government organisations (e.g. the UK Health Research Authority) to suggest ethical approval is not required for such activities, requests from funders and publishers to have ethical approval in place is commonplace in the authors' experience. We explore this using case studies from our own institution.
conclusionWe conclude that any public-facing activity with the purpose to systemically investigate knowledge, attitudes and experiences of members of the public as research and as human participants requires prior approval from an ethics committee. In contrast, engaging and involving members of the public and drawing on lived experience to inform aspects of research and teaching does not. However, lack of clarity around this distinction often results in the academic community seeking ethical approval 'just in case', leading to wasted time and resources and erecting unnecessary barriers for public involvement and public engagement. Instead, ethical issues and risks should be appropriately considered and mitigated by the relevant staff within their professional roles, be it academic or a professional service. Often this can involve following published guidelines and conducting an activity risk assessment, or similar. Moving forward, it is critical that academic funders and publishers acknowledge the distinction and agree on an accepted approach to avoid further exacerbating the problem.
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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.