{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,31]],"date-time":"2026-10-31T16:24:48Z","timestamp":1793463888643,"version":"4.5.0"},"reference-count":17,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,6,22]],"date-time":"2024-06-22T00:00:00Z","timestamp":1719014400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,6,22]],"date-time":"2024-06-22T00:00:00Z","timestamp":1719014400000},"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>Public involvement is important to the relevance and impact of health and care research, as well as supporting the democratisation of research. In 2020, the National Institute for Health Research (NIHR) reorganized and eliminated INVOLVE, an internationally recognised group that had played a central role in public involvement in the UK since 1996. Its remit was subsumed within a new center tasked with public involvement, participant recruitment, and evidence dissemination. A year later, in 2021, interested parties came together to discuss the evolution of INVOLVE and consider how to retain some of the important historical details and learn lessons from its long and important tenure.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>We hosted a witness seminar in 2022 that was one of four work groups and brought together public involvement leaders that had been part of the conception, development, and evolution of INVOLVE between 1995 and 2020. Witness seminars are a method used to capture the complexity and nuance of historical events or initiatives. They support critical thinking and reflection rather than simple commemoration. We identified those who had played a role in INVOLVE history, ensuring diversity of perspective, and invited them to attend and speak at the seminar. This took place during two sessions where witnesses provided their recollections and participated in a facilitated discussion.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Across the two online sessions, 29 witnesses attended and contributed thoughts and recollections. Two authors (SS, MP) identified six themes that were described in the witness seminar report and have been discussed, elaborated, and illustrated with witness quotations. These are: the importance of historical perspective; INVOLVE as a social movement; how INVOLVE worked (e.g. its hospitality, kindness, and inclusivity); INVOLVE as a quiet disruptor; public involvement evidence, knowledge, and learning; the infrastructure, processes, and systems developed by INVOLVE; and the demise and loss of INVOLVE as an internationally recognized center of excellence.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Discussion<\/jats:title>\n                <jats:p>The authors of this commentary reflected on the discussions that took place during the witness seminar and the themes that emerged, and share six broad learnings for future practice; (1) it is important to create and nurture public involvement communities of practice; (2) collaborative ways of working support open discussion amongst diverse groups; (3) be aware of the tensions between activism and being part of the establishment; (4) continued efforts should be made to build an evidence base for public involvement practice; (5) there are both benefits and drawbacks to having a centralized organization leading public involvement; and (6) support for public involvement in research requires a fit-for-purpose tendering process that embeds robust public involvement.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s40900-024-00598-8","type":"journal-article","created":{"date-parts":[[2024,6,22]],"date-time":"2024-06-22T12:02:00Z","timestamp":1719057720000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":15,"title":["Public involvement in UK health and care research 1995\u20132020: reflections from a witness seminar"],"prefix":"10.1186","volume":"10","author":[{"given":"Marisha Emily","family":"Palm","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Evans","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sophie","family":"Staniszewska","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Louca-Mai","family":"Brady","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bec","family":"Hanley","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kate","family":"Sainsbury","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Derek","family":"Stewart","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paula","family":"Wray","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,6,22]]},"reference":[{"issue":"8763","key":"598_CR1","doi-asserted-by":"publisher","first-page":"367","DOI":"10.1016\/0140-6736(91)90494-A","volume":"338","author":"M Peckham","year":"1991","unstructured":"Peckham M. Research and development for the National Health Service. The Lancet. 1991;338(8763):367\u201371. https:\/\/doi.org\/10.1016\/0140-6736(91)90494-A.","journal-title":"The Lancet"},{"key":"598_CR2","unstructured":"Department of Health. Duty to Involve Patients Strengthened: Briefing on Section 242 of NHS Act 2006. Gateway Reference 9138. London: DH, 2007. Available at: https:\/\/webarchive.nationalarchives.gov.uk\/ukgwa\/20130123192901\/http:\/\/www.dh.gov.uk\/en\/Publicationsandstatistics\/Publications\/PublicationsPolicyAndGuidance\/DH_081089"},{"key":"598_CR3","unstructured":"Medical Research Council. Public involvement and engagement \u2013 Medical Research Council. https:\/\/www.ukri.org\/what-we-do\/public-engagement\/public-engagement-mrc\/."},{"key":"598_CR4","doi-asserted-by":"publisher","unstructured":"Clancy C, Collins FS. Patient-Centered Outcomes Research Institute: The Intersection of Science and Health Care. Sci Transl Med. 2010;2(37). https:\/\/doi.org\/10.1126\/scitranslmed.3001235.","DOI":"10.1126\/scitranslmed.3001235"},{"key":"598_CR5","unstructured":"Canadian Institutes of Health Research. Canada\u2019s Strategy for Patient-Oriented Research. Canadian Institutes of Health Research; 2012. https:\/\/cihr-irsc.gc.ca\/e\/44000.html."},{"key":"598_CR6","unstructured":"Staley K, Sandvei M, Horder M. \u201cA Problem Shared...\u201d The Challenges of Public Involvement for Researchers in Denmark and the UK. TwoCan Associates; April 2019: 22. https:\/\/www.twocanassociates.co.uk\/wp-content\/uploads\/2017\/05\/A-problem-shared_forskningsrapport_A4.pdf"},{"key":"598_CR7","unstructured":"Consumer and Community Engagement. National Health and Medical Research Council https:\/\/www.nhmrc.gov.au\/about-us\/consumer-and-community-involvement\/consumer-and-community-engagement."},{"key":"598_CR8","unstructured":"Consumers Health Forum of Australia. Statement on Consumer and Community Involvement in Health and Medical Research, National Health and Medical Research Council.; 2006. https:\/\/www.nhmrc.gov.au\/about-us\/publications\/statement-consumer-and-community-involvement-health-and-medical-research."},{"key":"598_CR9","doi-asserted-by":"publisher","unstructured":"Jones EM, Tansey EM, eds. Human Gene Mapping Workshops c.1973-c.1991: The Transcript of a Witness Seminar Held by the History of Modern Biomedicine Research Group, Queen Mary, University of London, on 25 March 2014. Queen Mary University of London; 2015. https:\/\/doi.org\/10.1016\/j.gene.2016.02.030","DOI":"10.1016\/j.gene.2016.02.030"},{"issue":"4","key":"598_CR10","doi-asserted-by":"publisher","first-page":"499","DOI":"10.1080\/13619462.2011.626658","volume":"25","author":"NJ Crowson","year":"2011","unstructured":"Crowson NJ, Hilton M, McKay J, Marway H. Witness Seminar: The Voluntary Sector in 1980s Britain. Contemp Br Hist. 2011;25(4):499\u2013519. https:\/\/doi.org\/10.1080\/13619462.2011.626658.","journal-title":"Contemp Br Hist"},{"issue":"1","key":"598_CR11","doi-asserted-by":"publisher","first-page":"166","DOI":"10.1177\/1468794120974153","volume":"22","author":"EJ Nicholls","year":"2022","unstructured":"Nicholls EJ. The witness seminar: A research note. Qual Res. 2022;22(1):166\u201373. https:\/\/doi.org\/10.1177\/1468794120974153.","journal-title":"Qual Res"},{"key":"598_CR12","doi-asserted-by":"crossref","unstructured":"Doel RE, S\u00f6derqvist T, eds. The Historiography of Contemporary Science, Technology, and Medicine: Writing Recent Science. 1. publ. Routledge; 2006. ISBN: 0415272947","DOI":"10.4324\/9780203323885"},{"key":"598_CR13","unstructured":"INVOLVE. Briefing Notes for Researchers: Involving the Public in NHS, Public Health and Social Care Research. INVOLVE; 2012. ISBN 978-0-9557053-7-3"},{"key":"598_CR14","unstructured":"UK Standards for Public Involvement. National Institute for Health and Care Research; Public Health Agency Northern Ireland; Health and Care Research Wales; Chief Scientist Office Scotland; 2016. https:\/\/sites.google.com\/nihr.ac.uk\/pi-standards\/standards."},{"key":"598_CR15","doi-asserted-by":"publisher","unstructured":"Crowe S, Adebajo A, Esmael H, et al. \u2018All hands-on deck\u2019, working together to develop UK standards for public involvement in research. Res Involv Engagem. 2020;6(1):53, s40900\u2013020\u201300229-y. https:\/\/doi.org\/10.1186\/s40900-020-00229-y.","DOI":"10.1186\/s40900-020-00229-y"},{"key":"598_CR16","unstructured":"Della Porta D, Diani M. Social Movements: An Introduction. 2nd ed. Blackwell Publishing; 2006 ISBN-13: 978-1-4051-0282-7."},{"issue":"1","key":"598_CR17","doi-asserted-by":"publisher","first-page":"44","DOI":"10.1111\/hex.12007","volume":"18","author":"J Boote","year":"2015","unstructured":"Boote J, Wong R, Booth A. \u2018Talking the talk or walking the walk?\u2019 A bibliometric review of the literature on public involvement in health research published between 1995 and 2009. Health Expect. 2015;18(1):44\u201357. https:\/\/doi.org\/10.1111\/hex.12007.","journal-title":"Health Expect"}],"container-title":["Research Involvement and Engagement"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-024-00598-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s40900-024-00598-8\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-024-00598-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,6,22]],"date-time":"2024-06-22T12:02:21Z","timestamp":1719057741000},"score":1,"resource":{"primary":{"URL":"https:\/\/researchinvolvement.biomedcentral.com\/articles\/10.1186\/s40900-024-00598-8"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,6,22]]},"references-count":17,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["598"],"URL":"https:\/\/doi.org\/10.1186\/s40900-024-00598-8","relation":{},"ISSN":["2056-7529"],"issn-type":[{"value":"2056-7529","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,6,22]]},"assertion":[{"value":"12 March 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"7 June 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"22 June 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":"As stated in the manuscript, formal ethical review was not required as the witness seminar involved a group of contributors working toward a common goal. All contributors had full ownership and control of their own text, with the opportunity to edit or withdraw text up to final approval for publication.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"The manuscript authors and the witnesses who have been quoted in the manuscript have all given their consent for publication.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"S.S. has a competing interest as Co-Editor in Chief of Research Involvement and Engagement and excludes herself from the handling or review of this manuscript. S.S. is part funded by NIHR ARC WM, NIHR HPRU GI, NIHR HPRU GED, NIHR ESG Warwick, and NIHR HDRC Coventry.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"65"}}