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  • AANS and CNS Supports The Access to Claims Data Act of 2024 9.25.24

    September 25, 2024

    The Honorable Larry Bucshon, MD 
    United States House of Representatives 
    2313 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 

    The Honorable Derek Kilmer
    United States House of Representatives
    1226 Longworth House Office Building
    Washington, Dc 20515


    Dear Representatives Bucshon, Schrier, and Kilmer,
    The undersigned organizations would like to thank you for your leadership in sponsoring the Access to Claims Data Act of 2024. This bipartisan legislation would establish a process to allow clinician-led clinical data registries to request and obtain timely, broad, and continuous access to federal claims data. Quality improvement, innovation, health care transparency, accountability and value are at the forefront of our organizations’ mission. This legislation would make tangible strides to help us further those goals by providing an essential tool to create a safer, more efficient, and patient-centered health care delivery system.

    Clinician-led clinical data registries, like those that our specialty societies operate and maintain, are major sources of real-world evidence that are uniquely positioned to drive quality and effectiveness research but face significant regulatory barriers in federal programs. When registry data is combined with Medicare, Medicaid, and State Children’s Health Insurance Program (CHIP) claims data, registries can facilitate both quality improvement efforts and longitudinal studies. This outcomes-based work gives surgeons and other practitioners critical insights to improve health care quality and efficiency.

    Section 105(b) of the Medicare Access and CHIP Reauthorization Act (MACRA) directs the Secretary to provide Medicare claims data to Qualified Clinical Data Registries (QCDRs) “for purposes of linking such data with clinical outcomes data and performing risk-adjusted, scientifically valid analyses and research to support quality improvement or patient safety.” Unfortunately, significant regulatory barriers have prevented meaningful registry access to federal health plan claims data. Currently, the Centers for Medicare and Medicaid Services (CMS) offers a way of accessing its program data through the Virtual Research Data Center (VRDC), a virtual research environment under which QCDRs can—in theory—access Medicare claims data. The VRDC, however, is limited to narrowly defined research questions and is slow, costly, and cumbersome.

    The current program is inadequate because clinician-led clinical data registries require long-term and continuous access to large Medicare data sets to better track clinical outcomes over time. The inability of CMS to effectively implement Section 105(b) of MACRA impedes clinician-led clinical data registries from conducting longitudinal and other data analyses essential for enhancing quality, ensuring patient safety, optimizing cost-effectiveness, and facilitating research endeavors.

    The Access to Claims Data Act of 2024 would solve this long running problem and allow for clinician-led clinical data registries to link their provider-level clinical outcomes data with Medicare, Medicaid, and State Children’s Health Insurance Program claims data. This legislation would allow us to unlock powerful insights into long-term patient outcomes and device performance. With access to patient data between the medical intervention and death, we will be able to continue learning and improving healthcare.

    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. Should you need additional information or clarification, please contact Molly Peltzman, Associate Director of Health Policy at The Society of Thoracic Surgeons, at mpeltzman@sts.org.

    Sincerely,

    American Academy of Facial Plastic and Reconstructive Surgery
    American Academy of Ophthalmology
    American Academy of Otolaryngology–Head and Neck Surgery
    American Academy of Physical Medicine and Rehabilitation
    American Association of Neurological Surgeons
    American Association of Orthopaedic Surgeons
    American College of Cardiology
    American College of Emergency Physicians
    American College of Gastroenterology
    American College of Radiology
    American College of Rheumatology
    American College of Surgeons
    American Medical Association
    American Orthopaedic Foot & Ankle Society
    American Society for Gastrointestinal Endoscopy
    American Society for Metabolic and Bariatric Surgery
    American Society for Surgery of the Hand Professional Organization
    American Society of Anesthesiologists
    American Society of Cataract and Refractive Surgery
    American Society of Colon and Rectal Surgeons
    American Society of Plastic Surgeons
    American Urological Association
    Association for Clinical Oncology
    College of American Pathologists
    Congress of Neurological Surgeons
    Society for Vascular Surgery
    Society of American Gastrointestinal and Endoscopic Surgeons
    Society of Interventional Radiology
    Society of NeuroInterventional Surgery
    The Center for Professionalism and Value in Health Care
    The Society of Thoracic Surgeons

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