Giving a voice to patient and caregiver perspectives on equity in transplantation.

Purpose of review: While prior reviews have assessed barriers to transplantation experienced by patients and their families, they have not summarized how these stakeholders feel about whether and how those barriers impact equity in transplantation. We seek to comprehensively present the literature of patients and family perspectives on disparities in transplant access and potential solutions.

Recent findings: Some patients and their families report experiences of discrimination, while others from traditionally marginalized groups feel the system is equitable and do not perceive any different treatment as a result of their race/ethnicity, sex, age, religion, or geography. This summary suggests that not all of the disparities observed in transplant access are attributable to systemic or unconscious bias and may be partially alleviated through enhanced education and communication.

Summary: Lack of understanding and transparency lead to mistrust of organ transplantation, further exacerbating existing disparities. Patient and family engagement is paramount for ensuring the trust of the public who are the source of organs and those who directly benefit from this field. Partnerships between patient advocacy groups, professional societies, and policymakers have the potential to increase transparency while ensuring that the patient voice is represented in any system-level change and assessment.