Comments on CMS proposals on researcher data access

CMS website and logo on screen
Shutterstock / T. Schneider
Editor's note:

The authors submitted this comment letter to the Centers on Medicare and Medicaid Services on May 14, 2024.

Loren Adler, Matthew Fiedler, and Richard Frank responded to a request for information by the Centers for Medicare and Medicaid Services (CMS) regarding a recent CMS proposal to stop providing researchers with physical extracts of CMS data and instead provide data access solely through the Virtual Research Data Center (VRDC). The authors echo other researchers’ concerns that, without improvements to the VRDC, this change could seriously impede research with CMS data, harming both CMS programs and the health care system overall.

Their response makes four recommendations for how CMS could mitigate the downsides of shifting all research into the VRDC if CMS decides to proceed with this change:

  • Offer institution- or funder-level “site licenses” to the VRDC: The VRDC’s project and seat fees likely far exceed CMS’ marginal costs of providing access. Allowing research institutions to purchase a “site license” under which they would pay project and seat fees closer to CMS’ marginal costs could mitigate the large increase in the marginal price of data access associated with the transition to the VRDC but still allow CMS to recover its costs of providing data access. Ideally, such arrangements could even be implemented above the institutional level via negotiations with the relatively small number of federal and non-federal funders that support large amounts of research using CMS data.
  • Ensure that CMS’ data access processes operate efficiently: While improving the structure of the VRDC’s fees is important, the level of those fees matters too. Because those fees are set to cover CMS’ costs, keeping fees affordable requires CMS to operate efficiently. Without appropriate cost discipline in CMS’ operations, it will likely be difficult to fully (or even largely) mitigate the downsides of transitioning data access into the VRDC.
  • Reconsider whether CMS should recover its full costs through fees: CMS currently recovers the full cost of providing data access through fees. Given the potentially large social benefits of research using CMS data, CMS should consider subsidizing these costs (especially the fixed costs of operating data access infrastructure), although the authors note that this would need to be weighed against other uses of CMS administrative funds.
  • Set reduced fees for low-usage seats/projects: CMS should also set reduced fees for seats or projects with VRDC usage below a specified level. This would make it feasible for research team members who need to access raw data for a narrow set of purposes to do so, while also better accommodating projects that go through periods of inactivity.

Read the full comment letter here.

  • Acknowledgements and disclosures

    The Brookings Institution is financed through the support of a diverse array of foundations, corporations, governments, individuals, as well as an endowment. A list of donors can be found in our annual reports published online here. The findings, interpretations, and conclusions in this report are solely those of its author(s) and are not influenced by any donation.