- The Honorable John Joyce, MD
United States House of Representatives
2102 Rayburn House Office Building
Washington, DC 20515 - The Honorable Kim Schrier, MD
United States House of Representatives
1123 Longworth House Office Building
Washington, DC 20515
Dear Representatives Joyce and Schrier,
The undersigned organizations would like to thank you for your leadership in reintroducing the Access to Claims Data Act. This bipartisan bill would create a process enabling clinician-led clinical data registries to obtain timely, comprehensive, and ongoing access to federal claims data. Advancing quality improvement, innovation, transparency, accountability, and value in health care are at the core of our organizations’ missions. By granting access to this critical data, this legislation would help us move closer to a safer, more efficient, and patient-centered health care system.
Clinician-led registries, such as those managed by our specialty societies, are invaluable sources of realworld evidence that can significantly enhance quality and effectiveness research. However, they currently face considerable regulatory obstacles in accessing federal claims data. Linking clinical registry data with Medicare, Medicaid, and State Children’s Health Insurance Program (CHIP) data opens the door to much-needed quality improvement and long-term studies. This work provides essential insights for improving health care quality and efficiency.
Section 105(b) of the Medicare Access and CHIP Reauthorization Act (MACRA) instructed the Secretary to give Qualified Clinical Data Registries (QCDRs) access to Medicare claims data for the purpose of linking it with clinical outcomes and conducting scientifically valid, risk-adjusted analyses to support quality improvement and patient safety. Unfortunately, regulatory barriers have largely prevented registries from obtaining meaningful access to federal health plan data. While the Centers for Medicare and Medicaid Services (CMS) technically provides access through the Virtual Research Data Center (VRDC), the system is limited to narrow research questions and is often slow, expensive, and difficult to use.
The current process falls short because clinician-led registries need continuous, long-term access to comprehensive Medicare data to accurately track patient outcomes. CMS’s failure to effectively implement Section 105(b) of MACRA has hindered these registries’ ability to perform the detailed analyses necessary to improve quality, safety, cost-effectiveness, and research. The Access to Claims Data Act directly addresses this ongoing issue by allowing registries to connect their provider-level outcome data with Medicare, Medicaid, and CHIP claims data. This would unlock critical insights into long-term patient outcomes and device performance. With access to data from the time of intervention through the end of life, we can further our mission of ongoing learning and continuous improvement in health care. Once again, thank you for your support and leadership on these important issues. We look forward to working with you to see this legislation passed into law.
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