National transplant data largely begins when a patient is added to the waiting list, leaving limited visibility of when patients are referred to transplant programs, how and when they are evaluated, and when programs decide whether to place - or not place - a patient on the waiting list.
The Pre-Waitlist effort aims to bring referral and evaluation data into Transplant Data Services (TDS) at HRSA. This information could help the transplant community better understand access to care, fairness, and patient needs across the transplant system.
What we’ve heard from the transplant community
The proposed Pre-Waitlist Referral and Pre-Waitlist Transplant Evaluation forms completed 60-day and 30-day public comment periods. Following that feedback, HRSA directed additional discovery with the transplant community to inform the forms and how data could be submitted. This follows the same approach used for the Ventilated Patient Form: building, piloting, and incorporating feedback before finalizing the data specifications.
The discovery team led more than 20 open-ended discovery conversations with participants from transplant programs, researchers and data users, and electronic medical record (EMR) vendors. Participants described how their programs receive referrals, conduct evaluations, and record outcomes. Their input is helping identify differences in workflows and terminology to shape an approach that limits duplicate data entry.
Designing data submission
HRSA and the OPTN are continuing to work with transplant programs and EMR vendors on an approach that fits existing clinical workflows and limits duplicate data entry. This work will inform refinements to the forms and the design of pre-waitlist data submission through TDS.
What happens next
Next steps include refining the draft specifications, building a Pre-Waitlist application programming interface (API) into HRSA's Transplant Data Services (TDS), and piloting submissions with participating programs and vendors before broader implementation. Collaboration will continue after the data forms are finalized, with a commitment to improving as we learn.
Why this matters
Just as the Ventilated Patient Form aims to help save lives by increasing visibility into which patients are referred to OPOs for potential organ donation, Pre-Waitlist data aims to increase visibility into the community of patients who may need a transplant. Better information about patient referrals and evaluations will help the transplant community understand patient access, fairness, and demand for care.