Research Community Criticizes CMS’ Proposed Data Access Policy Changes

April 24, 2024
Society of General Internal Medicine says policy would ‘drastically impede scientific progress in the study of healthcare access, utilization, disparities, and health policy’

Healthcare research organizations continue to express serious concerns about the Centers for Medicare & Medicaid Services’ proposed changes to how researchers access CMS claims data and the increased fees to access the data.

Due to growing data security concerns and an increase in data breaches across the healthcare ecosystem, CMS decided to discontinue the delivery of physical data in support of external research projects and instead require researchers to use the Chronic Conditions Warehouse Virtual Research Data Center to conduct all research using CMS research identifiable file data. It also announced there would be fee increases to access the data center.

“This policy, especially related to the discontinuation of physical data extracts to support external projects, would significantly jeopardize future research focused on access to high-quality, evidence-based, cost-effective, equitable care,” the Association of American Medical Colleges stated in an April 16 letter to CMS. “While we appreciate CMS’s extension of its RFI comment deadline and delay in implementation, we ask that CMS withdraw these policies and instead work with the research community to develop an alternative approach to enable equitable, affordable access to CMS data while addressing concerns regarding data security.” 

The Society of General Internal Medicine (SGIM), which represents more than 3,300 physicians,
including many members who conduct federally funded research that uses claims data from
Medicare and Medicaid, responded to CMS’ request for information by saying it believes that the planned changes will be detrimental to the research community at large. “We believe that the changes described in the policy will drastically impede scientific progress in the study of healthcare access, utilization, disparities, and health policy,” the SGIM wrote. “Employing the policies described in the RFI will be disruptive to existing research projects, and curtail the breadth of future projects, because of the significant costs quoted by CMS and need for Virtual Research Data Center (VRDC) seats to undertake the work. While these changes may be manageable for some extremely well-funded institutions, they will disproportionately affect early career researchers and smaller institutions who lack the funds to support their burgeoning research careers because of the considerable costs to use the valuable resource that is CMS claims data.”

These changes could further exacerbate inequities among clinician investigators pursuing careers in health services research, among whom are academic internists, SGIM added, saying the policy
will limit the geographical and intellectual diversity of claims-based health services research, which in turn will dampen important scientific and economic evaluation in areas that require further evaluation, including urban-rural divides in healthcare access, utilization, and cost.

Tobias Gerhard, a professor of pharmacy and epidemiology at Rutgers Health and director of the Rutgers Institute for Health, Health Care Policy and Aging Research, which houses many researchers using these data, issued a statement on the proposed changes: “The proposed CMS data policy changes will have significant negative impact on the quality, feasibility and efficiency of health research and the people who benefit from this research, including the American public. The proposed policy changes will make important research data more expensive and more difficult to access for institutions across the country, particularly for students and early career investigators, and will lead to fewer, less ambitious, and less valid research studies. We are urging CMS to reconsider this policy change and continue to make data available to researchers.”

AcademyHealth, on behalf of the health services research community, wrote a letter on Feb. 12 asking that CMS immediately withdraw the notice and work with the research and data communities to design a solution that serves CMS goals while actually improving secure and
affordable researcher access to data.

AcademyHealth hosts the Medicaid Data Learning Network, the State-University Partnership Learning Network, the Medicaid Medical Director Network, and the Medicaid Outcomes Distributed Research Network. It represents many of the top researchers and a large proportion of users of CMS Research Identifiable File (RIF) data.

“The policy changes listed in this announcement will have a profound and deeply negative
impact on Medicaid and Medicare beneficiaries’ access to high-quality and evidence-informed
care, threaten the infrastructure of public health and health systems research, create significant
barriers to lesser-funded organizations and individual researchers, including ones that are the
most focused on issues of health equity, and stifle the crucial advancements in healthcare
research, especially for junior and future scholars of Medicaid and Medicare research,” the organization wrote.  “We call on CMS to immediately reverse or postpone these announced changes and engage in significant partnerships with the research community in designing the future of CMS data access.”

CMS is continuing to accept feedback on the RFI until May 15, 2024. Responses to the RFI must be sent via email to [email protected].  

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