In a letter to HRSA, ASN emphasized the need for separating the technology portion of the OPTN contract as a stand-alone contract, requiring OPTN contractors to have complete and accurate data, and the enforcement of separate governance boards.
Improving the nation’s donation and transplantation system to increase the number of life-saving organs available for transplant is a complex endeavor. There are many moving parts. Many interests and parties involved, including transplant hospitals, organ procurement organizations, and thousands of volunteers.
Enter the Organ Procurement and Transplantation Network (OPTN), which connects professionals involved with donation and transplantation. Those who sign organ donor cards, comment on policy proposals, and support donation and transplantation are key to the success of the system. A public-private partnership, OPTN is run by the United Network for Organ Sharing under an agreement with the US Department of Health and Human Services.
In a letter to the Health Resources and Health Administration (HRSA), ASN emphasized the need for separating the technology portion of the OPTN contract as a stand-alone contract, requiring OPTN contractors to have complete and accurate data readily available, and the enforcement of separate governance boards for OPTN and contractor(s). This would help improve coordination and the efficiency of organ procurement, distribution, and transplantation systems. For patients with end-stage organ failure, this would mean an increase in availability and better access to donor organs.
“ASN strongly advocates for HRSA to implement transparent guidelines, including clear presentation of eligibility criteria for transplant candidate listing and transplantation,” states the letter, a response to HRSA’s request for information about strengthening and improving OPTN. Having clear, useful, and easily accessible data would benefit the patient, their nephrologist, their dialysis facility, and the transplant center, as well as improve the coordination of care and communications necessary to identify the right transplant center fit, inform shared decision-making in organ acceptance, and advance the way to transplantation. “For example, patients need data and transparency when deciding on accepting higher risk organs such as ones with a KDPI of 85+ or from Hepatitis C+ donors.”
Standardized communication would also help, especially in regard to clarity, objectivity of data, and the ability to compare centers based on their results. “ASN recommends standardizing how information is shared with the patient, similar to how financial information sharing has been standardized by the Consumer Financial Protection Bureau,” the letter states.
The letter also emphasized the benefits of patient-centered dashboards, which are easy to understand, include few technical terms, and offer actionable information that can help patients make informed choices. “The information being provided should be tailored to the consumer of the data. Data reports, visualizations, summaries should be designed to different questions depending on whether these are patient facing or professional facing.”
ASN also recommended that OPTN collect data on social determinants of health in a responsible manner and leverage this information to identify and mitigate disparities in access to transplantation. “It is particularly important that OPTN also collect data on patients who are being denied an opportunity to be waitlisted (and the reasons for this) in order to be able to determine if there is a broader issue than the individual’s medical or psychosocial suitability for transplantation.”
Moreover, the current governance of the OPTN contractor could be improved through separate boards. This would make governance less opaque to the community and advance better processes for how volunteers are selected to serve on committees.
“The agenda setting for the committees is done by the contractor staff even though there is considerable staff turnover, limited institutional memory, or desire to change the status quo sometimes resulting in situations where the necessary expertise to make important decisions is lacking,” the letter states. “ASN believes separate governance boards is an important first step in addressing this and other issues. In addition, there needs to be the ability to invite external experts or even require that committees identify experts who would be able to inform committee discussions.”