Research Community Criticizes CMS’ Proposed Data Access Policy Changes

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

Due to growing concerns about data security and an increase in data breaches across the healthcare ecosystem, CMS decided to suspend the delivery of physical data in support of external research projects and instead require researchers using the Chronic Conditions Warehouse Virtual Research Data Center to conduct all research. using data from identifiable CMS research files. It also announced that there would be increases in fees 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 equitable, cost-effective, evidence-based, high-quality care,” the Association of American Medical Colleges. in an April 16 letter to CMS. “While we appreciate CMS’s extension of its deadline for comments on RFIs and the delay in implementation, we request that CMS withdraw these policies and instead work with the research community to develop an alternative approach that allows greater access. equitable and affordable access to CMS data while addressing data security concerns. .”

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

These changes could further exacerbate inequalities among clinical researchers pursuing careers in health services research, including academic internists, the SGIM added, stating that the policy
will limit the geographic and intellectual diversity of claims-based health services research, which in turn will slow important scientific and economic evaluations in areas that require further evaluation, including urban-rural divides in access, utilization, and cost of medical care.

Tobias Gerhard, a professor of pharmacy and epidemiology at Rutgers Health and director of the Rutgers Institute for Health, Healthcare Policy and Aging Research, which is home to many researchers who use this data, issued a statement about the proposed changes: “The policy CMS Proposed Data Policy The changes will have a 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 difficult to access for institutions across the country, particularly for students and early-career researchers, and will lead to fewer, less ambitious, and less valid research studies. “We urge 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 February 12 requesting that CMS immediately withdraw the notice and work with the research and data communities to design a solution that serves CMS’s goals and the at the same time improve safety and
affordable access to data for researchers.

AcademyHealth hosts the Medicaid Data Learning Network, the State-University Partnership Learning Network, the Medicaid Medical Directors Network, and the Medicaid Distributed Outcomes Research Network. It represents many of the leading 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 profoundly negative impact.
impact on Medicaid and Medicare beneficiaries’ access to high-quality, evidence-based services
healthcare, threaten public health infrastructure and health systems research, create important
barriers for less funded organizations and individual researchers, including those who are the
more focused on health equity issues and stifle crucial advances in healthcare.
research, especially for young and future Medicaid and Medicare researchers,” the organization wrote. “We call on CMS to immediately reverse or postpone these announced changes and engage in meaningful partnerships with the research community to shape the future of CMS data access.”

CMS continues to accept comments on the RFI until May 15, 2024. Responses to the RFI should be emailed to [email protected].

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