With broad implications for kidney research using data from the Centers for Medicare & Medicaid Services (CMS), the agency issued a Request for Information (RFI) on a proposal on Research Data Request and Access Policy Changes on February 14, 2024, which was later updated on March 1, 2024. In its RFI, CMS announced a decision to discontinue the physical delivery of critical health care data in support of external research projects and to require researchers to use the Chronic Conditions Data Warehouse Virtual Research Data Center to conduct all research using CMS Research Identifiable File data. After soliciting feedback from its members, including those with direct experience with conducting research with data from federal agencies, ASN responded to CMS's RFI on May 15, 2024.
ASN shared how CMS's proposal jeopardizes the future of research on kidney diseases and will likely directly harm Medicare and Medicaid beneficiaries’ access to and quality of care and specifically highlighted the following concerns:
The lack of transparency regarding the future of CMS kidney-related data in light of this proposal
The unique nature of the federal government's role in kidney care given Medicare's End-Stage Renal Disease program and thus, the potential for jeopardizing the real-time research necessary for policymakers to improve kidney care
The impact that a future dearth of research will have on disadvantaged populations given the inequities faced by patients with kidney diseases and their families
The impact of increased costs for researchers and their institutions, especially those at smaller, less financially endowed universities
The potential to impede the future capacity of researchers across specialties but in particular, in the realm of kidney diseases
CMS data, especially kidney data, are an invaluable resource to policymakers, health care systems, researchers, and the millions of individuals impacted by the contribution of that research through improving outcomes and saving valuable resources. ASN urged CMS to pause the proposal to allow for time to address concerns of the kidney community, those of the broader health care community, and, most importantly, those of individuals living with kidney diseases. ASN will continue to advocate for transparent and open access to federal datasets and keep the kidney research community informed of any updates.
ASN will provide future updates as policy is refined. To read ASN's full response to the RFI, please visit https://www.asn-online.org/policy/webdocs/05.15.24VRDCLetterFinal.pdf or the ASN website at www.asn-online.org/policy.
