{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,12]],"date-time":"2026-06-12T21:34:27Z","timestamp":1781300067226,"version":"3.54.1"},"reference-count":27,"publisher":"BMJ","issue":"11","license":[{"start":{"date-parts":[[2023,11,27]],"date-time":"2023-11-27T00:00:00Z","timestamp":1701043200000},"content-version":"unspecified","delay-in-days":26,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000133","name":"Agency for Healthcare Research and Quality","doi-asserted-by":"crossref","award":["T32HS026122"],"award-info":[{"award-number":["T32HS026122"]}],"id":[{"id":"10.13039\/100000133","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/100000054","name":"National Cancer Institute","doi-asserted-by":"publisher","award":["K99CA277366"],"award-info":[{"award-number":["K99CA277366"]}],"id":[{"id":"10.13039\/100000054","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000054","name":"National Cancer Institute","doi-asserted-by":"publisher","award":["L60CA264691"],"award-info":[{"award-number":["L60CA264691"]}],"id":[{"id":"10.13039\/100000054","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","award":["UL1TR002243"],"award-info":[{"award-number":["UL1TR002243"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100025638","name":"West End Home Foundation","doi-asserted-by":"crossref","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}],"id":[{"id":"10.13039\/100025638","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/100006545","name":"National Institute on Minority Health and Health Disparities","doi-asserted-by":"crossref","award":["U54MD010722"],"award-info":[{"award-number":["U54MD010722"]}],"id":[{"id":"10.13039\/100006545","id-type":"DOI","asserted-by":"crossref"}]},{"name":"National Institute of Health","award":["U2COD023196"],"award-info":[{"award-number":["U2COD023196"]}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2023,10,31]]},"published-print":{"date-parts":[[2023,11]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>\n                      During the last two decades, researchers and funders increasingly recognised the value of engaging patients and communities in research. Despite progress, community engagement remains challenging. There are few examples of successful participant engagement in governance of large-scale research programmes. Here we describe efforts to engage participants as partners in new governance roles in the\n                      <jats:italic>All of Us<\/jats:italic>\n                      Research Program, a precision medicine research initiative which intends to enrol at least one million participants. Using intentional, participant-centric engagement strategies, the\n                      <jats:italic>All of Us<\/jats:italic>\n                      Engagement Core recruited and integrated a diverse group of participants into governance roles including Steering and Executive Committees. Evaluation measures included a survey to assess Consortium Members\u2019 readiness for participant engagement.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Over a 3-year period, all items on the survey increased (higher readiness). Of the 291 respondents to the 2021 survey, respondents most frequently agreed that participant perspectives are essential (100%), participants understand enough to contribute meaningfully (94%) and participants should be involved in setting goals (96%). Respondents least frequently agreed that participants should have an equal voice in Working Groups (75%), Steering Committee (69%) and Executive Committee (63%).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>In conclusion, participants can be effectively integrated into large-scale research governance, which is associated with increased researcher readiness for engagement.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2022-068100","type":"journal-article","created":{"date-parts":[[2023,11,27]],"date-time":"2023-11-27T12:45:36Z","timestamp":1701089136000},"page":"e068100","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":8,"title":["Integrating participants as partners in research governance and operations: an approach from the\n                    <i>All of Us<\/i>\n                    Research Program Engagement Core"],"prefix":"10.1136","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1410-6231","authenticated-orcid":false,"given":"Catherine","family":"Hammack-Aviran","sequence":"first","affiliation":[{"name":"Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, Tennessee, USA"},{"name":"Ethics, Education, Policy, and Society, Research Immersion Program at Vanderbilt University Medical Center, Nashville, Tennessee, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alecia Malin","family":"Fair","sequence":"additional","affiliation":[{"name":"Department of Medicine; Division of Geriatrics, Vanderbilt University Medical Center, Nashville, Tennessee, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melinda","family":"Aldrich","sequence":"additional","affiliation":[{"name":"Department of Medicine, Division of Genetic Medicine, Vanderbilt University Medical Center, Nashville, Tennessee, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Richmond","sequence":"additional","affiliation":[{"name":"Department of Social Sciences and Health Policy and Department of Implementation Science, Wake Forest School of Medicine, Winston-Salem, North Carolina, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Selena McCoy","family":"Carpenter","sequence":"additional","affiliation":[{"name":"Office of Health Equity, Vanderbilt University Medical Center, Nashville, Tennessee, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karriem S","family":"Watson","sequence":"additional","affiliation":[{"name":"All of Us Research Program, National Institutes of Health, Bethesda, Maryland, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth G","family":"Cohn","sequence":"additional","affiliation":[{"name":"Zucker School of Medicine, Northwell Health Feinstein Institutes for Medical Research, Manhasset, New York, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8043-513X","authenticated-orcid":false,"given":"Consuelo Hopkins","family":"Wilkins","sequence":"additional","affiliation":[{"name":"Department of Medicine; Division of Geriatrics, Vanderbilt University Medical Center, Nashville, Tennessee, USA"},{"name":"Office of Health Equity, Vanderbilt University Medical Center, Nashville, Tennessee, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2023,11,27]]},"reference":[{"key":"2025121604451296000_13.11.e068100.1","unstructured":"Staley K . 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