FAS Organ Procurement Organization Innovation Cohort Shares Data to Advance Organ Recovery Research

WASHINGTON, D.C.– Today the Federation of American Scientists (FAS) announced that the Organ Procurement Organization (OPO) Innovation Cohort is opening up ten years of data to engage in research to increase the rates of lifesaving organ donations every year.

Data from the U.S. Department of Health and Human Services (HHS) indicate that improvements in organ recovery practices will lead to at least7,000additional lifesaving transplants every year.

Bipartisan Congressional leaders have highlighted the need for accelerated data-driven reforms givenCOVID-19’sravaging effects on organs. According to a July 19, 2021letterled by the Senate Finance Committee and the House Committee on Oversight and Reform:

“The COVID-19 pandemic is exacerbating the need for organs now and creating an urgent health equity issue, as communities of color are disproportionately impacted by the failures of the current organ donation system and the effects of COVID-19.”

Historically, OPO accountability and data-driven improvement has been hindered by opacity coupled with self-interpreted and self-reported performance data. The OPO Innovation Cohort will make public a trove of data regarding OPO performance, operations, finances, and governance with the goal of informing ongoing federal policymaking toward improving OPO performance and addressing health inequities. The first tranche of data released will be shared withMIT’s Healthy ML Lab and Wilson Lab, and will include case-level performance data, including all unstructured case notes, allowing for never-before-possible analysis of the organ donation process. Detailed data to be shared as part of the OPO Innovation Cohort can be foundhere. A visualization of OPO performance can be foundhere.

MIT’s Healthy ML Lab, led byDr. Marzyeh Ghassemi, will review the de-identified case notes of seven OPOs, representing one-sixth of the country, to better understand where and how potential donors are lost, including by race and ethnicity. Dr. Ghassemi’s groundbreaking work will include using natural language processing and sentiment analysis of case notes to better understand the ways variation in care, communication and context might impact organ procurement and utilization. The Wilson Lab, led byDr. Ashia Wilson, will target estimation of risks and opportunities for organ placement by OPOs to improve utilization and fairness of the organ transplant system. Dr. Wilson’s work specializes in using optimization to improve the efficiency and fairness of machine learning systems, and will bring this expertise to look for opportunities to increase the availability of organs for all demographic groups.

“Working with this data is a first step towards making better decisions about how to save more lives through organ procurement and transplantation. We have an opportunity to use machine learning to understand potential issues and lead improvements in transparency and equity,” said Dr. Marzyeh Ghassemi.

“Patients deserve transparency, and this research is even more important given what we are learning about COVID-19’s effects on organs,” said Jennifer Erickson, Senior Fellow, Federation of American Scientists.

The seven organ procurement organizations who are leading in opening up their data include: Donor Network West, Life Connection of Ohio, LiveOn New York, Louisiana Organ Procurement Agency, Mid-America Transplant, OurLegacy, Southwest Transplant Alliance. They have publicly committed to:

• Transparency: public sharing of data/analysis in order to set a standard to which all OPOs can be held;
• Accountability:support for the OPO final rule, and any efforts to move up implementation date so all parts of the country can be served by high-performing OPOs as soon as possible in 2024; and
• Equity: commitment to analyzing/publishing data to ensure all parts of community served.

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