Engaging patients in organ transplant listing meetings: A survey study

Organ transplant listing decisions are made by multidisciplinary selection committees using structured, deliberative processes to evaluate candidate eligibility. Engaging patients in these meetings has been proposed as a strategy to enhance transparency, trust, and patient-centered care. This study assessed patient and professional perspectives via an online survey of 1349 American Society of Transplantation and National Kidney Foundation members (907 patients, caregivers, and family; 442 transplant team members). Among patient respondents, 77% (n = 694) supported the option for patients to participate in transplant listing meetings, compared with 27% (n = 121) of transplant team members. Additionally, 79% (n = 717) of patients agreed that patient involvement would enhance trust, compared with 37% (n = 164) of transplant team members. Qualitative analysis revealed 4 key themes: patient-centeredness requires inclusion (voice and visibility, addressing information gaps, fostering transparency, and trust); feasibility (open dialogue in patient-inclusive settings, logistics, and workflow); tradeoffs (potential harms and equity); and seeking common ground. This study highlighted the perspectives between patients and transplant care team members regarding patient participation in listing committee meetings. The contrasting views highlight an area for further exploration. Bridging this gap may help create a collaborative decision-making framework that equally values and integrates the opinions of both patients and the transplant care team.