Sickle cell disease (SCD), the most common inherited blood disorder in the United States, affects over 100,000 Americans, with about 1 in 12 African Americans carrying the gene. The disease is characterized by severe episodes of acute and chronic pain throughout an individual's life, and often causes severe anemia and greatly increased susceptibility to infections. Many people living with SCD suffer from a number of these complications and more, greatly decreasing their quality of life.
In 2020, CODE co-hosted a virtual Webinar and Roundtable on Leveraging Data to Address Sickle Cell Disease. CODE held these events in partnership with the U.S. Department of Health and Human Services Office of the Chief Technology Officer (CTO) and Office of the Assistant Secretary for Health (OASH). The Webinar engaged over 300 individuals, and the Roundtable convened over 70 expert stakeholders and patients in the SCD community to assess opportunities to improve treatment options, access to informed care, and physician/patient trust. Roundtable participants identified data resources, gaps, and strategies for data application to help policymakers, healthcare providers, and other stakeholders improve the care of individuals who suffer from Sickle Cell Disease.
Insights from the Roundtable were used to inform the SCD Health-a-thon, hosted by HHS and Howard University’s 1867 Health Innovations Project. The Health-a-thon had participants use existing data to build prototypes and find solutions to challenges raised at the Roundtable with the goal of improving health outcomes. The Roundtable surfaced a number of policy solutions to be implemented, including guaranteed Medicaid access for all SCD patients, credentialing for hospitals and providers based on compliance with protocols and other guidelines, and expanding the SCD data collection program to additional states. You can read more about CODE’s work on Sickle Cell Disease in this FedScoop article.