For over 60 years, health services researchers have relied on Medicare and Medicaid administrative claims data to drive the latest innovations in advancing America’s health care efficiency, quality, and cost-effectiveness. This data has been crucial in identifying health care trends, evaluating policy impacts, and advancing medical knowledge. It should come as no surprise then that AcademyHealth and the research community responded swiftly when the Center for Medicare and Medicaid Services (CMS) announced a new data access policy and fee structure that would dramatically limit access to this data on February 12, 2024, requiring data access exclusively through the Virtual Research Data Center (VRDC) by August 19, 2024, due to growing data security concerns. AcademyHealth's advocacy campaign has successfully demonstrated to CMS that research stakeholders are ready to address patient data privacy concerns while maintaining vital research. Consequently, CMS has delayed proposals to consider stakeholder feedback.

The impact of restricted access to CMS data cannot be overstated. Researchers use this data to track public health trends, assess the effectiveness of health care policies, and develop interventions that improve patient outcomes. Without access to this data, many critical research projects would be delayed or canceled, hindering advancements in health care quality and efficiency. The proposed CMS policy would severely impact research nationwide in the following ways:

  1.  The VRDC is far more expensive (over $30,000 per person, per project, per year) for researchers than the current model of partnering with physical data holders and prohibits screen sharing, which prevents the data from being reused across multiple projects and grants.
  2. The VRDC is far less technically capable than the tools researchers currently use, lacking support for advanced computing techniques like machine learning or microsimulation modeling, and does not allow the use of statistical languages like R or Python without significant additional costs, which will slow down researchers conducting cutting-edge studies.
  3. The proposed six-month transition time is unrealistic for researchers who would need to halt their work, find new data sets and methodologies, migrate to the VRDC, and secure hundreds of thousands of dollars in new funding.

To address these concerns, AcademyHealth collaborated with staff, members, peer organizations, and hosted learning networks like the Medicaid Data Learning Network (MDLN) to draft a comprehensive letter to CMS outlining the potential harms of this policy and suggesting pathways forward. We argued that this policy would do little to increase data security while severely restricting research opportunities for graduate students, early career researchers, and under-resourced organizations that disproportionately focus on issues of health equity.

We called on CMS to:

  1. Immediately recall the notice and further engage with stakeholders to consider the problem scope and potential solutions.
  2. Constructively engage with the research community to understand current data practices and design an accessible and usable VRDC. 
  3. Phase in any changes and provide financial and technical support for transitioning to a new data holding regime. 
  4. Continue allowing physical data holding based on enhanced data security measures or demonstrated compliance with data privacy standards. 

AcademyHealth brought experts from our membership to meet with key congressional offices, including the Senate Finance Committee, the Senate Health, Education, Labor, and Pensions Committee, and the House Ways and Means Committee and others to discuss the implications of the guidance and the need for more stakeholder engagement. We also met multiple times with senior CMS leadership to express our concerns and willingness to find a way to protect patients effectively while minimizing the impact on research. 

CMS has responded positively to the comments that we have provided. Shortly after we submitted our letter, CMS extended the deadline for accepting RFI responses by two months. On April 15, CMS announced that they would not implement any new changes until at least 2025, specifically to allow more time to hear from stakeholders and process responses, which is a significant victory for researchers who rely on this data. CMS’ actions align with our communicated advocacy priorities, and we are grateful that CMS is taking the concerns of researchers seriously.  

You can read more about the implications of the initial CMS proposal in our recent commentary published in JAMA Health Forum

CMS will be discussing this policy change at our Annual Research Meeting in Baltimore this summer. The panel is “The Centers for Medicare & Medicaid Services Data and Information Products,” on Tuesday, July 2nd at 9am ET. To register to attend the 2024 ARM this June 29-July 2, click here

The advocacy work at AcademyHealth on behalf of our field is funded by the dues paid by our individual and organizational members.

Josh Caplan Headshot

Josh Caplan, M.A., M.P.P.

Director for Government Affairs - AcademyHealth

Josh Caplan is the Director for Government Affairs at AcademyHealth, overseeing advocacy and public policy str... Read Bio


Isa Granados, M.S.

Ph.D. Candidate - Duke University School of Medicine

Isa Granados, AcademyHealth’s Spring 2024 Health Policy Fellow, is currently pursuing her Ph.D. in Population ... Read Bio

A Johnson headshot

Annaliese Johnson, M.P.P.

AcademyHealth - Senior Manager

Annaliese Johnson is a Senior Manager of AcademyHealth’s Evidence-Informed State Health Policy Institute, wher... Read Bio

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