Putting patients first: UNOS’ vision for waitlist and organ offer transparency

The Centers for Medicare & Medicaid Services (CMS) recently released proposed changes to the Increasing Organ Transplant Access (IOTA) Model, which aims to increase kidney transplants nationwide. A key element of the proposal focuses on improving transparency for patients on the transplant waitlist by requiring participating hospitals to provide regular, individualized reports to patients detailing information about their waitlist status and the organ offer decisions made on their behalf.

There is no question: Ensuring patients are informed about their waitlist status and organ offer information is critical. But how this information is communicated to patients matters as much as the information itself. Complex medical details and interactions with transplant teams can become overwhelming, and physicians play an essential role in translating that complexity by helping patients and their families understand their treatment.

UNOS supports CMS’ efforts to make sure patients receive timely updates about decisions made by their care team that could affect their chances of receiving an organ — but sharing raw clinical data alone isn’t enough. True transparency means presenting information in a clear, consistent format, and in a way that does not add administrative burden to hospitals.

To achieve this balance, CMS should work with the Organ Procurement and Transplantation Network (OPTN) and its contractors to securely transmit patient attribution lists to the OPTN, which would allow for:

• Automatic creation of the specific reports required for each Medicare patient;
• Easy‑to‑read, consistent formatting that patients can understand; and
• Reduced burden on hospitals.

To make this information even more accessible to patients, CMS could also:

• Send the reports directly to each Medicare patient after receiving them from the OPTN; or
• Work with HRSA to hire a contractor to build a secure online portal or app where transplant patients can view these reports and educational materials.

The proposed updates to the IOTA model could enhance the patient experience by empowering them to participate more actively in their care and reduce the stress and anxiety that come with awaiting a lifesaving organ transplant. That said, the information must be presented in a way that patients can understand, and hospitals must be able to implement the IOTA requirements without a disproportionate burden.

UNOS has already begun work to support the successful implementation of CMS’ IOTA Model by developing a dashboard for transplant hospitals that helps them track the IOTA performance metrics and is ready to work with CMS and the community to develop additional tools for participants and patients.

Read UNOS’ public comment on the proposed updates to the IOTA model below.

UNOS Comment on Proposed CMS IOTA Model Updates