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Patient Participation in Organ Transplant Selection Meetings: A Qualitative Study
Natalie Graham1, Arden Meyer1, Zachary Jager1
1Lab for Research on Ethics, Aging, and Community Health, Tufts University, Medford, Massachusetts.
Importance:
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.
Objective:
To examine perspectives of patients and clinicians regarding patient participation in transplant selection committee meetings.
Design, Setting, And Participants:
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.
Main Outcomes And Measures:
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.
Results:
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.
Conclusions And Relevance:
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.