Capitol Correspondence - 03.19.24

Researchers Raise Concerns Over CMS Proposal that Could Impact Access to Medicaid and Medicare Data for Disability Research

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Some researchers specializing in autism and developmental disabilities have expressed concerns over a new proposal from the Centers for Medicare & Medicaid Services (CMS) that could severely restrict access to crucial data. The proposed changes, outlined in a recent Request for Information, have sparked fears that research on the experiences of individuals with disabilities could be significantly hampered along with other vulnerable populations.

Currently, researchers rely on what’s known as Research Identifiable File (RIF) data from CMS to gain insights into the lives of people with disabilities and the elderly, particularly those covered by Medicaid and Medicare. CMS is now considering changes to the rules governing access to this data, citing concerns about data security and healthcare breaches and has requested public comment.

Under the proposed changes, all access to CMS data would be required to go through the agency’s cloud-based system, with exceptions granted only to federal and state agencies. Additionally, CMS is planning to revise its pricing structure, introducing substantial upfront costs and annual renewal fees for researchers. These fees, which could amount to $20,000 upfront plus $10,000 annually per user, have raised significant concerns among researchers.

In response to criticism, a spokesperson for CMS stressed the agency’s commitment to providing secure access to data while acknowledging researchers’ concerns. CMS extended the deadline for stakeholders to submit public feedback on the proposal until May 15.