{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,27]],"date-time":"2026-08-27T02:19:13Z","timestamp":1787797153652,"version":"build-2784847793"},"reference-count":37,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2026,7,9]],"date-time":"2026-07-09T00:00:00Z","timestamp":1783555200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,7,9]],"date-time":"2026-07-09T00:00:00Z","timestamp":1783555200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100006364","name":"Institut National Du Cancer","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100006364","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2026,8]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Patient and public involvement (PPI) is increasingly promoted in health services research, yet empirical evidence remains limited on how participatory governance is operationalised in research practices.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This qualitative study explored patient partners' experiences of involvement in the PaRole OncO France (PROOF) research project, a multicentre participatory action research (PAR) project aimed at adapting, implementing and evaluating a peer support intervention in oncology. Semi\u2010structured interviews were conducted with patient partners involved in project governance. Data were analysed using inductive thematic analysis, with patient partners involved in validating analytic outputs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Seven of the eight invited patient partners (PPs) were interviewed. Three interrelated themes emerged: (1) personal invitation as recognition: a catalyst of engagement, whereby being personally solicited was experienced as recognition of experiential legitimacy; (2) securing a \u2018real place\u2019: relational trust, dedicated spaces and institutional frictions, capturing both the conditions enabling genuine co\u2010governance (dedicated spaces, recognition of experiential knowledge and responsive research teams) and the administrative and temporal constraints that strained it; and (3) reciprocal transformation: perceived impacts on the research and on personal trajectories. Patient partners perceived meaningful contributions to intervention design and team cohesion, alongside personal benefits such as skills development and network building. Persistent barriers were primarily structural, including administrative constraints, research temporalities and regulatory procedures.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>PROOF illustrates how intentional participatory governance mechanisms can support sustained PPI in research. Addressing administrative barriers, clarifying roles and nurturing trust and communication are crucial for meaningful participation in oncology research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>The qualitative data presented in this manuscript were obtained through interviews with patient partners. Patient partners co\u2010designed governance structures, participated in all committees, co\u2010facilitated co\u2010construction workshops, and contributed to data interpretation and manuscript validation.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70762","type":"journal-article","created":{"date-parts":[[2026,7,9]],"date-time":"2026-07-09T11:33:15Z","timestamp":1783596795000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Patients as Co\u2010Researchers in Oncology: A Qualitative Exploration of Participatory Governance"],"prefix":"10.1111","volume":"29","author":[{"given":"Ya\u00ebl","family":"Busnel","sequence":"first","affiliation":[{"name":"Research on Healthcare Performance RESHAPE, INSERM U1290 Universit\u00e9 Claude Bernard Lyon 1 Lyon France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aline","family":"Rollet","sequence":"additional","affiliation":[{"name":"Research on Healthcare Performance RESHAPE, INSERM U1290 Universit\u00e9 Claude Bernard Lyon 1 Lyon France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aline","family":"Cristiani","sequence":"additional","affiliation":[{"name":"Assistance Publique \u2013 H\u00f4pitaux de Paris (AP\u2010HP) Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"V\u00e9ronique","family":"Rivoire","sequence":"additional","affiliation":[{"name":"Hospices Civils de Lyon Lyon France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laurie","family":"Panse","sequence":"additional","affiliation":[{"name":"Research on Healthcare Performance RESHAPE, INSERM U1290 Universit\u00e9 Claude Bernard Lyon 1 Lyon France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie","family":"Haesebaert","sequence":"additional","affiliation":[{"name":"Research on Healthcare Performance RESHAPE, INSERM U1290 Universit\u00e9 Claude Bernard Lyon 1 Lyon France"},{"name":"Hospices Civils de Lyon, P\u00f4le Sant\u00e9 Publique Unit Recherche et Epid\u00e9miologie Cliniques Lyon France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"PROOF Investigators Group","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,7,9]]},"reference":[{"key":"e_1_2_14_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-020-05241-2"},{"key":"e_1_2_14_3_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2021.25181"},{"key":"e_1_2_14_4_1","volume-title":"ReseArch With Patient and Public invOlvement: A RealisT Evaluation \u2013 the RAPPORT Study","author":"Wilson P.","year":"2026"},{"key":"e_1_2_14_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(13)62229-1"},{"key":"e_1_2_14_6_1","unstructured":"\u201cBriefing Notes for Researchers \u2010 Public Involvement in NHS Health and Social Care Research | NIHR \u201d accessed January 2 2026 https:\/\/www.nihr.ac.uk\/briefing-notes-researchers-public-involvement-nhs-health-and-social-care-research."},{"key":"e_1_2_14_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12888"},{"key":"e_1_2_14_8_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781446294406.n294"},{"key":"e_1_2_14_9_1","doi-asserted-by":"publisher","DOI":"10.1038\/s43586-023-00214-1"},{"key":"e_1_2_14_10_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.n2061"},{"key":"e_1_2_14_11_1","unstructured":"\u201cInvolve Patients.\u201d NIHR accessed March 27 2023 https:\/\/www.nihr.ac.uk\/health-and-care-professionals\/engagement-and-participation-in-research\/involve-patients.htm."},{"key":"e_1_2_14_12_1","unstructured":"\u201cHomepage | PCORI \u201d accessed October 3 2025 https:\/\/www.pcori.org\/."},{"key":"e_1_2_14_13_1","unstructured":"Government of Canada CI of HR. \u201cStrategy for Patient\u2010Oriented Research \u2010 Patient Engagement Framework \u2010 CIHR \u201d 2014 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