{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,22]],"date-time":"2026-09-22T15:59:25Z","timestamp":1790092765588,"version":"4.0.1"},"reference-count":39,"publisher":"American Medical Association (AMA)","issue":"9","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JAMA Netw Open"],"abstract":"\n Importance<\/jats:title>\n Organ transplant selection committee meetings determine patient eligibility for life-saving organs, yet their deliberations remain largely inaccessible to patients. Limited transparency contributes to patient-reported mistrust and disengagement. Patient engagement in these processes may improve understanding and trust, but its impact on deliberation, logistics, and patient-clinician relationships remains unclear.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n To examine perspectives of patients and clinicians regarding patient participation in transplant selection committee meetings.<\/jats:p>\n <\/jats:sec>\n \n Design, Setting, and Participants<\/jats:title>\n This qualitative study used semistructured interviews with a purposive sample of patients and clinicians nationally between November 16, 2023, and April 21, 2025. Interviews were conducted via video or telephone. Transcripts were analyzed using iterative thematic analysis. Participant demographics were summarized using descriptive statistics.<\/jats:p>\n <\/jats:sec>\n \n Main Outcomes and Measures<\/jats:title>\n Key themes reflecting patient and clinician perspectives on patient engagement in transplant selection committee meetings, including perceived benefits, risks, and strategies to support safe and effective implementation.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n Interviews were conducted with 41 participants (mean [SD] age, 48 [7] years; 22 [53.7%] male), including 19 patients (46.3%), 13 clinicians (31.7%), and 9 patient-clinicians (21.9%). Four interrelated themes emerged: (1) rebalancing power and autonomy, (2) process understanding as empowerment, (3) mutual vulnerability, and (4) navigating uncertainty. Across themes, participants emphasized that meaningful participation depends on addressing these interdependent challenges and proposed strategies, including structured roles, facilitated participation, meeting summaries, and standardized communication frameworks.<\/jats:p>\n <\/jats:sec>\n \n Conclusions and Relevance<\/jats:title>\n In this qualitative study, participants expressed conditional support for patient engagement as a pathway to improve trust, transparency, and patient empowerment. Findings suggest that participation should be understood as a stepwise process requiring attention to power dynamics, shared understanding, and mutual vulnerability. Structured, patient-centered frameworks with appropriate safeguards are needed before implementation. Future studies should evaluate feasibility and the impact of participation models on decision-making and patient-clinician relationships.<\/jats:p>\n <\/jats:sec>","DOI":"10.1001\/jamanetworkopen.2026.35542","type":"journal-article","created":{"date-parts":[[2026,9,22]],"date-time":"2026-09-22T15:00:18Z","timestamp":1790089218000},"page":"e2635542","source":"Crossref","is-referenced-by-count":0,"title":["Patient Participation in Organ Transplant Selection Meetings"],"prefix":"10.1001","volume":"9","author":[{"given":"Natalie","family":"Graham","sequence":"first","affiliation":[{"name":"Lab for Research on Ethics, Aging, and Community Health, Tufts University, Medford, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arden","family":"Meyer","sequence":"additional","affiliation":[{"name":"Lab for Research on Ethics, Aging, and Community Health, Tufts University, Medford, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zachary","family":"Jager","sequence":"additional","affiliation":[{"name":"Lab for Research on Ethics, Aging, and Community Health, Tufts University, Medford, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maeve","family":"Stover","sequence":"additional","affiliation":[{"name":"Lab for Research on Ethics, Aging, and Community Health, Tufts University, Medford, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Leigh-Anne","family":"Dale","sequence":"additional","affiliation":[{"name":"Transplant Institute, Beth Israel Deaconess Medical Center, Boston, Massachusetts"},{"name":"Harvard Medical School, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Juan","family":"Ramos","sequence":"additional","affiliation":[{"name":"Transplant Institute, Beth Israel Deaconess Medical Center, Boston, Massachusetts"},{"name":"Harvard Medical School, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristen","family":"Kennefick","sequence":"additional","affiliation":[{"name":"Lab for Research on Ethics, Aging, and Community Health, Tufts University, Medford, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nikita","family":"Bhatnagar","sequence":"additional","affiliation":[{"name":"Lab for Research on Ethics, Aging, and Community Health, Tufts University, Medford, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sophie","family":"Dorf-Kamienny","sequence":"additional","affiliation":[{"name":"Lab for Research on Ethics, Aging, and Community Health, Tufts University, Medford, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Keren","family":"Ladin","sequence":"additional","affiliation":[{"name":"Lab for Research on Ethics, Aging, and Community Health, Tufts University, Medford, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aditya S.","family":"Pawar","sequence":"additional","affiliation":[{"name":"Transplant Institute, Beth Israel Deaconess Medical Center, Boston, Massachusetts"},{"name":"Harvard Medical School, Boston, Massachusetts"},{"name":"Ash Center for Democratic Governance and Innovation, Harvard Kennedy School, Cambridge, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"10","published-online":{"date-parts":[[2026,9,22]]},"reference":[{"issue":"8","key":"zoi260954r1","doi-asserted-by":"publisher","first-page":"503","DOI":"10.7326\/0003-4819-155-8-201110180-00006","article-title":"Decision making in liver transplant selection committees: a multicenter study.","volume":"155","author":"Volk","year":"2011","journal-title":"Ann Intern Med"},{"issue":"2","key":"zoi260954r5","doi-asserted-by":"publisher","first-page":"291","DOI":"10.1097\/TP.0000000000004464","article-title":"Achieving equity in organ transplantation: recommendations for action based on the National Academies of Sciences, Engineering, and Medicine report.","volume":"107","author":"Dageforde","year":"2023","journal-title":"Transplantation"},{"issue":"2","key":"zoi260954r7","doi-asserted-by":"publisher","first-page":"223","DOI":"10.1377\/hlthaff.2012.1133","article-title":"Patient and family engagement: a framework for understanding the elements and developing interventions and policies.","volume":"32","author":"Carman","year":"2013","journal-title":"Health Aff (Millwood)"},{"issue":"4","key":"zoi260954r8","doi-asserted-by":"publisher","first-page":"216","DOI":"10.1080\/01944366908977225","article-title":"A ladder of citizen participation.","volume":"35","author":"Arnstein","year":"1969","journal-title":"J Am Inst Plann"},{"issue":"5","key":"zoi260954r9","doi-asserted-by":"publisher","first-page":"681","DOI":"10.1016\/S0277-9536(96)00221-3","article-title":"Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango).","volume":"44","author":"Charles","year":"1997","journal-title":"Soc Sci Med"},{"issue":"22","key":"zoi260954r10","doi-asserted-by":"publisher","first-page":"1979","DOI":"10.1001\/jama.2025.19683","article-title":"Patient participation in kidney transplant candidacy-opening the door to the \u201cGod Committee\u201d.","volume":"334","author":"Pawar","year":"2025","journal-title":"JAMA"},{"issue":"6","key":"zoi260954r11","doi-asserted-by":"publisher","first-page":"1273","DOI":"10.1016\/j.ajt.2026.01.002","article-title":"Wisdom of the crowd: ensuring the justness and validity of group decision-making in solid organ transplant.","volume":"26","author":"Harper","year":"2026","journal-title":"Am J Transplant"},{"issue":"7","key":"zoi260954r12","doi-asserted-by":"publisher","first-page":"1437","DOI":"10.1097\/TP.0000000000002962","article-title":"Racial and ethnic disparities in kidney transplant access within a theoretical context of medical eligibility.","volume":"104","author":"Ku","year":"2020","journal-title":"Transplantation"},{"issue":"1","key":"zoi260954r13","doi-asserted-by":"publisher","first-page":"22","DOI":"10.1186\/s12939-021-01616-x","article-title":"A scoping review of inequities in access to organ transplant in the United States.","volume":"21","author":"Park","year":"2022","journal-title":"Int J Equity Health"},{"issue":"11","key":"zoi260954r14","doi-asserted-by":"publisher","first-page":"2361","DOI":"10.1016\/j.ajt.2025.07.2468","article-title":"Engaging patients in organ transplant listing meetings: a survey study.","volume":"25","author":"Pawar","year":"2025","journal-title":"Am J Transplant"},{"issue":"5","key":"zoi260954r15","doi-asserted-by":"publisher","DOI":"10.2196\/13876","article-title":"OpenNotes after 7 years: patient experiences with ongoing access to their clinicians\u2019 outpatient visit notes.","volume":"21","author":"Walker","year":"2019","journal-title":"J Med Internet Res"},{"issue":"2","key":"zoi260954r16","doi-asserted-by":"publisher","first-page":"121","DOI":"10.7326\/0003-4819-153-2-201007200-00008","article-title":"Open notes: doctors and patients signing on.","volume":"153","author":"Delbanco","year":"2010","journal-title":"Ann Intern Med"},{"issue":"11","key":"zoi260954r17","doi-asserted-by":"publisher","first-page":"1580","DOI":"10.1177\/1049732309350732","article-title":"Experiencing \u201cthe other side\u201d: a study of empathy and empowerment in general practitioners who have been patients.","volume":"19","author":"Fox","year":"2009","journal-title":"Qual Health Res"},{"issue":"6","key":"zoi260954r18","doi-asserted-by":"publisher","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","article-title":"Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.","volume":"19","author":"Tong","year":"2007","journal-title":"Int J Qual Health Care"},{"issue":"7","key":"zoi260954r19","doi-asserted-by":"publisher","first-page":"771","DOI":"10.1111\/tri.12575","article-title":"\u2018Suspended in a paradox\u2019-patient attitudes to wait-listing for kidney transplantation: systematic review and thematic synthesis of qualitative studies.","volume":"28","author":"Tong","year":"2015","journal-title":"Transpl Int"},{"issue":"2","key":"zoi260954r20","doi-asserted-by":"publisher","first-page":"186","DOI":"10.1001\/jamainternmed.2024.6653","article-title":"Experience of older adults and their family members in the kidney transplant evaluation.","volume":"185","author":"Butler","year":"2025","journal-title":"JAMA Intern Med"},{"issue":"2","key":"zoi260954r21","doi-asserted-by":"publisher","first-page":"114","DOI":"10.1097\/MOT.0000000000001198","article-title":"Utility and bias in psychosocial evaluations for transplant listing.","volume":"30","author":"Ladin","year":"2025","journal-title":"Curr Opin Organ Transplant"},{"issue":"12","key":"zoi260954r22","doi-asserted-by":"publisher","first-page":"1692","DOI":"10.1007\/s11606-014-2878-x","article-title":"A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research.","volume":"29","author":"Concannon","year":"2014","journal-title":"J Gen Intern Med"},{"issue":"1","key":"zoi260954r23","doi-asserted-by":"publisher","first-page":"693","DOI":"10.1186\/s12913-017-2630-4","article-title":"The impact of patient advisors on healthcare outcomes: a systematic review.","volume":"17","author":"Sharma","year":"2017","journal-title":"BMC Health Serv Res"},{"issue":"3","key":"zoi260954r24","first-page":"A70","article-title":"Community advisory boards in community-based participatory research: a synthesis of best processes.","volume":"8","author":"Newman","year":"2011","journal-title":"Prev Chronic Dis"},{"issue":"7","key":"zoi260954r25","doi-asserted-by":"publisher","first-page":"1292","DOI":"10.1007\/s11606-018-4565-9","article-title":"Patient, family, and community advisory councils in health care and research: a systematic review.","volume":"34","author":"Oldfield","year":"2019","journal-title":"J Gen Intern Med"},{"issue":"3","key":"zoi260954r28","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2020.1753","article-title":"The views and experiences of clinicians sharing medical record notes with patients.","volume":"3","author":"DesRoches","year":"2020","journal-title":"JAMA Netw Open"},{"issue":"10","key":"zoi260954r29","doi-asserted-by":"publisher","first-page":"1361","DOI":"10.1007\/s11606-012-2077-6","article-title":"Shared decision making: a model for clinical practice.","volume":"27","author":"Elwyn","year":"2012","journal-title":"J Gen Intern Med"},{"key":"zoi260954r30","doi-asserted-by":"publisher","DOI":"10.2196\/74066","article-title":"Examining transparency in kidney transplant recipient selection criteria: nationwide cross-sectional study.","volume":"4","author":"Rivera","year":"2025","journal-title":"JMIR AI"},{"issue":"7","key":"zoi260954r32","doi-asserted-by":"publisher","first-page":"1778","DOI":"10.1111\/j.1600-6143.2007.01848.x","article-title":"Perceived transparency and fairness of the organ allocation system and willingness to donate organs: a national study.","volume":"7","author":"Boulware","year":"2007","journal-title":"Am J Transplant"},{"key":"zoi260954r33","doi-asserted-by":"publisher","DOI":"10.34067\/KID.0000001156","article-title":"Patient participation in selection committee meetings: PRO.","author":"Pawar","journal-title":"Kidney360"},{"key":"zoi260954r34","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2024.307998","article-title":"Exploring democratic deliberation in public health: bridging division and enhancing community engagement.","author":"Bosch\u00e9","year":"2025","journal-title":"Am J Public Health"},{"issue":"19","key":"zoi260954r35","doi-asserted-by":"publisher","first-page":"6714","DOI":"10.1002\/cam4.4213","article-title":"Patient participation in multidisciplinary tumor conferences: how is it implemented? what is the patients\u2019 role? what are patients\u2019 experiences?","volume":"10","author":"Ansmann","year":"2021","journal-title":"Cancer Med"},{"issue":"1","key":"zoi260954r36","doi-asserted-by":"publisher","first-page":"85","DOI":"10.1097\/CCM.0000000000002807","article-title":"Patient-centered structured interdisciplinary bedside rounds in the medical ICU.","volume":"46","author":"Cao","year":"2018","journal-title":"Crit Care Med"},{"issue":"1","key":"zoi260954r37","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2015-010034","article-title":"Engaging patients through open notes: an evaluation using mixed methods.","volume":"6","author":"Esch","year":"2016","journal-title":"BMJ Open"},{"issue":"1","key":"zoi260954r38","doi-asserted-by":"publisher","first-page":"187","DOI":"10.1016\/j.chest.2017.08.001","article-title":"Scarce resource allocation during disasters: a mixed-method community engagement study.","volume":"153","author":"Biddison","year":"2018","journal-title":"Chest"},{"key":"zoi260954r4","volume-title":"Partnering With Your Transplant Team: The Patient\u2019s Guide to Transplantation","author":"US Department of Health and Human Services","year":"2008"},{"key":"zoi260954r6","volume-title":"21st Century Cures Act: Interoperability","author":"US Department of Health and Human Services","year":"2020"},{"key":"zoi260954r27","author":"Alexander","year":"1962"},{"key":"zoi260954r39","author":"Mansbridge","year":"2012"},{"key":"zoi260954r2","unstructured":"Centers for Medicare & Medicaid Services. Special Requirements for Transplant Programs. Accessed August 4, 2026. https:\/\/www.cms.gov\/medicare\/health-safety-standards\/certification-compliance\/organ-transplant-program"},{"key":"zoi260954r3","unstructured":"Organ Procurement and Transplantation Network. Member Evaluation Plan. Accessed August 4, 2026. https:\/\/www.hrsa.gov\/sites\/default\/files\/hrsa\/optn\/evaluation_plan.pdf"},{"key":"zoi260954r26","unstructured":"The Alliance. OPTN Charter. Accessed August 4, 2026. https:\/\/www.organdonationalliance.org\/glossary\/optn-charter\/"},{"key":"zoi260954r31","unstructured":"Health Resources and Services Administration. Transparency in Program Selection. Accessed August 4, 2026. https:\/\/www.hrsa.gov\/optn\/policies-bylaws\/public-comment\/transparency-program-selection"}],"container-title":["JAMA Network Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/jamanetwork.com\/journals\/jamanetworkopen\/articlepdf\/2854313\/graham_2026_oi_260954_1789416847.68635.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,22]],"date-time":"2026-09-22T15:00:21Z","timestamp":1790089221000},"score":1,"resource":{"primary":{"URL":"https:\/\/jamanetwork.com\/journals\/jamanetworkopen\/fullarticle\/2854313"}},"subtitle":["A Qualitative Study"],"short-title":[],"issued":{"date-parts":[[2026,9,22]]},"references-count":39,"journal-issue":{"issue":"9","published-print":{"date-parts":[[2026,9,1]]}},"URL":"https:\/\/doi.org\/10.1001\/jamanetworkopen.2026.35542","relation":{},"ISSN":["2574-3805"],"issn-type":[{"value":"2574-3805","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9,22]]}}}