National Kidney Foundation patient advocates played an integral role in The Scientific Registry of Transplant Recipients (SRTR) People Driven Transplant Metrics Consensus Conference in Minnesota earlier this month. As part of this conference, Director of Transplant Policy and Strategy Morgan Reid spoke on a panel, “What do Patients, Their Families, and Living Donors Want to Know About Transplant?” In preparation for her presentation, she collected feedback from members of the NKF Kidney Advocacy Committee to share with the hybrid-- in-person and virtual-- audience.
Attendees were comprised of transplant stakeholders, including organ procurement organization (OPO) professionals, transplant center administrators, transplant physicians, other patient advocacy organizations, living donors, and transplant recipients.
Thanks to our phenomenal patient advocates, Reid shared several suggested recommendations, urging SRTR to adopt these metrics to help patients and their families make better-informed decisions about transplant:
- Number of referrals from dialysis centers/nephrologists
- Number of self-referrals
- Percent of declined kidney offers per patient and the reasons why
- Reasons for organ failure (noncompliance, disease recurrence, loss of insurance, etc.)
- Create a quality of life metric
- Wait times by blood type
The above recommended metrics are based on data displayed per U.S. transplant center.
A Patient-Centered Transplant System
Kidney failure patients interested in a transplant deserve to have data presented using simple language, making it easy to determine if a transplant is a good personal option. If a patient chooses to explore kidney transplantation as a treatment option for organ failure, SRTR-created transplant center program-specific reports (PSRs) or “report cards” to help patients choose which transplant center would be ideal.
But PSR data reported by SRTR has not always been easy to understand or displayed information that patients or their families might want to know about transplant. We are optimistic that the counsel from our patient advocates will improve how SRTR collects and shares data moving forward.
SRTR is responsible for collecting and publicly sharing organ donation and transplantation data. They strive to enhance the data to improve patients’ transplant journey. NKF believes it is important to remind transplant stakeholders that it’s essential to humanize data—behind every statistic is a person with a story and this must not be forgotten. NKF will remain committed to promoting a more patient-centered and transparent organ donation and transplant system and are fortunate to rely on our patient advocates to help ensure this happens.