Chairman Krishnamoorthi, Rep. Porter Raise Concerns About Data Collection and Management at Organ Procurement Organizations
Washington, D.C. (Nov. 11, 2022)—Rep. Raja Krishnamoorthi, Chairman of the Subcommittee on Economic and Consumer Policy, and Rep. Katie Porter, Member of the Subcommittee on Economic and Consumer Policy, sent letters to eleven Organ Procurement Organizations (OPOs) asking them to confirm the accuracy and completeness of information the organizations previously provided to the Subcommittee as part of its investigation into the organ donation and transplant system in the United States.
“We are writing regarding troubling new information obtained by the Subcommittee about inaccurate and incomplete data maintained by entities within the U.S. organ-sharing network,” the Members wrote. “According to an assessment conducted by the United States Digital Service, these data weaknesses likely ‘are contributing to the current organ waste issues in the transplant ecosystem’ and indicated that ‘a usable organ could go unused.’ This information raises serious questions about whether Organ Procurement Organizations (OPOs)…are taking the steps necessary to identify and secure viable organs to save Americans’ lives.”
Since launching its investigation in December 2020, the Subcommittee has revealed how OPOs are failing to adequately secure organs for transplant, leaving hundreds of thousands of Americans seeking organ transplants without essential healthcare. In May 2021, the Subcommittee requested data from OPOs related to the three key steps in the organ procurement process—referral, approach, and authorization. An OPO’s failure at any point in this process can prevent a successful transplant, and researchers estimate that large numbers of potential organs are lost because of failures by OPOs.
Following the OPOs’ initial data productions, new reporting and documents obtained by the Subcommittee have heightened concerns about how OPOs and the United Network for Organ Sharing (UNOS)—a nonprofit agency that contracts with the U.S. government—collect and manage data related to the organ donation process. UNOS runs the database that OPOs use to share information about available organs and match donors with recipients. The system relies on OPOs to provide complete and accurate data, and OPOs across the country rely on that data to serve patients.
On July 31, 2022, the Washington Post reported that a review done by the United States Digital Service (USDS) found the UNOS organ sharing system was plagued by significant data collection, sharing, and transparency issues. The USDS report, which was the focus of an August 2022 Senate Finance Committee hearing, concluded that “the organ transplantation system in this country is not set up to enable the best outcomes for patients waiting for life-saving transplants.”
A secondary staff memo prepared by USDS and obtained by the Subcommittee concluded that a “single source of truth for data does not exist” within the U.S. organ sharing ecosystem. Noting that the data systems used by OPOs and UNOS rely significantly on the manual entry of large quantities of data, which creates a significant risk of error across data systems and makes it difficult to determine where errors have occurred, USDS staff concluded that errors likely contribute to “current waste issues in the transplant ecosystem” and poor outcomes for patients.
UNOS’s contract with the U.S. government gives the non-profit ownership over the data that OPOs provide to UNOS and prevents the Health Resources and Services Administration (HRSA), which oversees UNOS, from performing its own data analysis or using the data to propose improvements to the organ transplant system. This lack of transparent, reliable data raises serious questions about the quality of the data maintained and relied upon by the individual OPOs.
In light of the serious data collection and management issues across the organ-sharing community, the Subcommittee is concerned that the OPOs’ data production to the Subcommittee could be incomplete or inaccurate. In their letter, Chairman Krishnamoorthi and Rep. Porter requested information and documents related to the OPOs’ data collection practices as well as any supplemental data necessary to address deficiencies or inaccuracies in the data previously provided to the Subcommittee.
Click here to read the letters to the 11 OPOs.