{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,3]],"date-time":"2026-11-03T07:22:25Z","timestamp":1793690545853,"version":"4.5.1"},"reference-count":27,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,5,31]],"date-time":"2024-05-31T00:00:00Z","timestamp":1717113600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,5,31]],"date-time":"2024-05-31T00:00:00Z","timestamp":1717113600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Res Involv Engagem"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Involving 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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Main body<\/jats:title>\n                <jats:p>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\u2019 experience. We explore this using case studies from our own institution.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>We 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 \u2018just in case\u2019, 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.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s40900-024-00587-x","type":"journal-article","created":{"date-parts":[[2024,5,31]],"date-time":"2024-05-31T08:02:01Z","timestamp":1717142521000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":38,"title":["Public involvement and engagement in scientific research and higher education: the only way is ethics?"],"prefix":"10.1186","volume":"10","author":[{"given":"Claire","family":"Nollett","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Matthias","family":"Eberl","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jim","family":"Fitzgibbon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Natalie","family":"Joseph-Williams","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Hatch","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,5,31]]},"reference":[{"key":"587_CR1","unstructured":"Health Research Authority. Putting people first - embedding public involvement in health and social care research 2023 [ https:\/\/www.hra.nhs.uk\/planning-and-improving-research\/best-practice\/public-involvement\/putting-people-first-embedding-public-involvement-health-and-social-care-research\/"},{"key":"587_CR2","doi-asserted-by":"publisher","first-page":"e063356","DOI":"10.1136\/bmjopen-2022-063356","volume":"12","author":"I Lang","year":"2022","unstructured":"Lang I, King A, Jenkins G, Boddy K, Khan Z, Liabo K. How common is patient and public involvement (PPI)? Cross-sectional analysis of frequency of PPI reporting in health research papers and associations with methods, funding sources and other factors. BMJ Open. 2022;12:e063356.","journal-title":"BMJ Open"},{"issue":"7","key":"587_CR3","doi-asserted-by":"publisher","first-page":"590","DOI":"10.1111\/imcb.12657","volume":"101","author":"M Eberl","year":"2023","unstructured":"Eberl M, Joseph-Williams N, Nollett C, Fitzgibbon J, Hatch S. Overcoming the disconnect between scientific research and the public. Immunol Cell Biol. 2023;101(7):590.","journal-title":"Immunol Cell Biol"},{"key":"587_CR4","unstructured":"UK Public Involvement Standards Development Partnership. UK Standards for Public Involvement 2019 [ https:\/\/drive.google.com\/file\/d\/1U-IJNJCfFepaAOruEhzz1TdLvAcHTt2Q\/view"},{"issue":"7","key":"587_CR5","doi-asserted-by":"publisher","first-page":"e017124","DOI":"10.1136\/bmjopen-2017-017124","volume":"8","author":"S Staniszewska","year":"2018","unstructured":"Staniszewska S, Denegri S, Matthews R, Minogue V. Reviewing progress in public involvement in NIHR research: developing and implementing a new vision for the future. BMJ Open. 2018;8(7):e017124.","journal-title":"BMJ Open"},{"issue":"1","key":"587_CR6","doi-asserted-by":"publisher","first-page":"e13896","DOI":"10.1111\/hex.13896","volume":"27","author":"S Hatch","year":"2023","unstructured":"Hatch S, Fitzgibbon J, Tonks AJ, Forty L. Diversity in patient and public involvement in healthcare research and education\u2014realising the potential. Health Expect. 2023;27(1):e13896.","journal-title":"Health Expect"},{"key":"587_CR7","unstructured":"Research Excellence Framework. Research Excellence Framework 2029 2024 [ https:\/\/www.ref.ac.uk\/"},{"key":"587_CR8","doi-asserted-by":"crossref","unstructured":"Nguyen Thanh H, Cheah P, Chambers M. Identifying \u2018hard-to-reach\u2019 groups and strategies to engage them in biomedical research: perspectives from engagement practitioners in Southeast Asia. Wellcome Open Res. 2019;4(102).","DOI":"10.12688\/wellcomeopenres.15326.1"},{"key":"587_CR9","unstructured":"National Institute for Health and Care Research. Briefing notes for researchers-public involvement in NHS, health and social care research. 2021."},{"key":"587_CR10","unstructured":"National Co-ordinating Centre for Public Engagement. Introducing Public Engagament 2024 [ https:\/\/www.publicengagement.ac.uk\/introducing-public-engagement"},{"key":"587_CR11","unstructured":"Health Research Authority. What do I need to do? 2020 [ https:\/\/www.hra.nhs.uk\/planning-and-improving-research\/best-practice\/public-involvement\/what-do-i-need-do\/"},{"key":"587_CR12","doi-asserted-by":"crossref","unstructured":"Pandya-Wood R, Barron D, Elliott J. A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards. Res Involv Engagem. 2017;3(3).","DOI":"10.1186\/s40900-017-0058-y"},{"key":"587_CR13","unstructured":"Canadian Institutes of Health Research. Ethics Guidance for Developing Partnerships with Patients and Researchers 2020 [ https:\/\/cihr-irsc.gc.ca\/e\/51910.html#2"},{"key":"587_CR14","doi-asserted-by":"crossref","unstructured":"Hersh D, Israel M. C. S. The ethics of patient and public involvement across the research process: towards partnership with people with aphasia. Aphaisology. 2021.","DOI":"10.1080\/02687038.2021.1896870"},{"key":"587_CR15","doi-asserted-by":"publisher","first-page":"23","DOI":"10.1080\/15265161.2019.1619869","volume":"19","author":"T Abma","year":"2019","unstructured":"Abma T, Groot B, Widdershoven B. The Ethics of Public and Service User Involvement in Health Research: the need for participatory reflection on everyday ethical issues. Am J Bioeth. 2019;19:23\u20135.","journal-title":"Am J Bioeth"},{"key":"587_CR16","doi-asserted-by":"crossref","unstructured":"Groot B, Abma T. Ethics framework for citizen science and public and patient participation in research. BMC Med Ethics. 2022;23.","DOI":"10.1186\/s12910-022-00761-4"},{"key":"587_CR17","unstructured":"National Institute for Health and Care Research. Ethical dimensions of community engagement and involvement in global health research 2021 [ https:\/\/www.nihr.ac.uk\/documents\/ethical-dimensions-of-community-engagement-and-involvement-in-global-health-research\/28258#references"},{"key":"587_CR18","doi-asserted-by":"crossref","unstructured":"Martineau JT, Minyaoui A, Boivin A. Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice. BMC Med Ethics. 2020;21.","DOI":"10.1186\/s12910-020-0460-0"},{"key":"587_CR19","unstructured":"Hanley B, Staley K, Stewart D, Barber R. Qualitative research and patient and public involvement in health and social care research: What are the key differences? 2019 [ https:\/\/www.learningforinvolvement.org.uk\/content\/resource\/qualitative-research-and-patient-and-public-involvement-in-health-and-social-care-research-what-are-the-key-differences\/"},{"key":"587_CR20","doi-asserted-by":"crossref","unstructured":"Doria N, Condran B, Curtis Maillet LB, Dowling D, Levy L. A. Sharpening the focus: differentiating between focus groups for patient engagement vs. Qualitative Res Res Involv Engagem. 2018;4.","DOI":"10.1186\/s40900-018-0102-6"},{"key":"587_CR21","doi-asserted-by":"crossref","unstructured":"Morgan H, Thomson G, Crossland N, Dykes F, Hoddinott P, \u2018BIBS\u2019 study team. Combining PPI with qualitative research to engage \u2018harder-to-reach\u2019 populations: service user groups as co-applicants on a platform study for a trial. Res Involv Engagem. 2016;24(7).","DOI":"10.1186\/s40900-016-0023-1"},{"key":"587_CR22","unstructured":"Health Research Authority. Accessing study support and advice services 2024 [ https:\/\/www.hra.nhs.uk\/planning-and-improving-research\/research-planning\/access-study-support-advice-services\/"},{"key":"587_CR23","doi-asserted-by":"crossref","unstructured":"Bridges S, Lamont-Robinson C, Herbert A, Din M, Smith C, Ahmed N et al. Talking trials: an arts-based exploration of attitudes to clinical trials amongst minority ethnic members of the South Riverside Community of Cardiff Health expectations. 2023(26):3.","DOI":"10.1111\/hex.13740"},{"key":"587_CR24","unstructured":"Health Research Authority. Is my study research? 2024 [ https:\/\/www.hra-decisiontools.org.uk\/research\/"},{"key":"587_CR25","unstructured":"Health Research Authority. 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Ethics Guide 2022 [ https:\/\/issuu.com\/universityofsurrey\/docs\/surrey_ethics_cop_v20_single?fr=sNDM5NzUwNzU0OTI"}],"container-title":["Research Involvement and Engagement"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-024-00587-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s40900-024-00587-x\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-024-00587-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,5,31]],"date-time":"2024-05-31T08:08:17Z","timestamp":1717142897000},"score":1,"resource":{"primary":{"URL":"https:\/\/researchinvolvement.biomedcentral.com\/articles\/10.1186\/s40900-024-00587-x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,5,31]]},"references-count":27,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["587"],"URL":"https:\/\/doi.org\/10.1186\/s40900-024-00587-x","relation":{},"ISSN":["2056-7529"],"issn-type":[{"value":"2056-7529","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,5,31]]},"assertion":[{"value":"15 February 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"24 May 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"31 May 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable \u2013 no participants involved.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"CN is Academic Lead for Public Involvement and Engagement in the Centre for Trials Research, Cardiff University. SH is the Public Involvement and Engagement Manager for the School of Medicine, Cardiff University, alongside researchers ME and NJW who are the Joint Academic Leads for Public Involvement and Engagement in the School of Medicine, Cardiff University. ME is also the Engagement Lead for the Systems Immunity Research Institute at Cardiff University and the Engagement Secretary for the British Society for Immunology. JF was the Lead Public Contributor in the School of Medicine at the time of writing.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Authors information"}}],"article-number":"50"}}