COGR Responds to Centers for Medicare & Medicaid Services February 2024 Request for Information on Research Data Request and Access Policy Changes – Updated March 1, 2024

COGR submitted comments in response to the Centers for Medicare & Medicaid Services’ (CMS) proposed policy changes concerning access to Research Identifiable Files (RIF Data). COGR emphasizes that the proposed mandate to confine research using CMS data to the CMS Chronic Conditions Warehouse Virtual Research Data Center (CCW VRDC) would significantly impede the ability of researchers to link datasets and employ institution-specific analytical tools, undermining the effectiveness and innovation in ongoing and future federally funded research. The organization notes that its member institutions have already established secure data enclaves meeting CMS security standards, and that large initiatives, such as the National COVID Cohort Collaborative and PCORnet, critically rely on current data linkage practices that would be rendered unfeasible under the new restrictions. COGR further critiques the proposed pricing structure for VRDC access, highlighting that the substantial fees per user and per project would particularly burden emerging research institutions and early-stage investigators, limiting equitable access to CMS data and potentially excluding less-resourced research teams from vital health research opportunities. The organization argues that such financial and logistical barriers threaten to reduce the number and diversity of researchers capable of conducting epidemiological and health policy studies using CMS data. In conclusion, COGR strongly urges CMS to withdraw or delay the proposed policy changes, maintain the existing system for data distribution, and collaborate further with research stakeholders and federal agencies to develop a data access and costing model that balances security considerations with equitable research access and continued scientific innovation.