Update (03/01/2024): CMS released an updated Request for Information (RFI) (PDF) expanding the solicitation of researcher feedback to include data access fees and the timing for these changes. We are also extending the due date for RFI feedback to May 15, 2024. If you have already responded to the RFI and would like to respond to the new items, please send a second submission with your new responses to VRDCRFI@cms.hhs.gov.
The Centers for Medicare & Medicaid Services (CMS) is announcing two changes to the current research data request and access policies. To review the current CMS Research Identifiable File (RIF) policies please click here (PDF).
Data Dissemination Policy Change for Researchers
BACKGROUND: CMS currently offers researchers two options for accessing CMS Research Identifiable File (RIF) data: (1) researchers can request that physical data extracts are shipped to their institution; and (2) researchers can access the data they need in the Chronic Conditions Warehouse Virtual Research Data Center (CCW VRDC), a secure CMS research environment. Due to growing data security concerns and an increase in data breaches across the healthcare ecosystem, CMS is making changes to the policies around how CMS data is accessed for research.
NEW POLICY: All researchers requesting RIFs must access data within CMS’s CCW VRDC environment and comply with CMS CCW VRDC policies (e.g., only aggregate/statistical information that complies with the CMS cell suppression policy, and is de-identified according to the HIPAA Privacy Rule, may be downloaded from the CCW VRDC). CMS is discontinuing the delivery of physical data extracts in support of external research projects. Only federal and state agencies may request an exception to this policy. CMS will communicate directly with eligible agencies on the process for requesting a policy exception.
IMPLEMENTATION: CMS will implement this policy change in two phases.
Phase 1: Phase 1 policy changes are targeted to become effective on August 19, 2024. The final phase 1 implementation date may be adjusted based on RFI feedback. If the implementation date is adjusted, CMS will notify researchers in future guidance. Phase 1 policy changes include the following:
- CMS will no longer allow the physical dissemination of RIF data for new research studies. All new RIF Data Use Agreement (DUA) requests will be required to access RIF data within the CCW VRDC.
- Research studies with a RIF DUA approved prior to phase 1 implementation, may continue to receive physical data extracts, but researchers cannot request to expand the study to include new types of data. Researchers may only request additional years of physical data previously approved for the study.
- CMS will no longer offer physical shipment of preliminary Medicare Advantage Encounter or preliminary Transformed Medicaid Statistical Information System (T-MSIS) Analytic Files (TAF) data for any research DUAs. Researchers who wish to access these preliminary files must use the CCW VRDC.
Phase 2: During phase 2, all RIF DUAs approved for physical RIF data extracts prior to the implementation of phase 1, must be closed or transitioned into the CCW VRDC. This phase will not begin before 2025, but the exact timing and details on the transition process will be announced in the future.
Request for Information: CMS has posted an informal Request for Information (RFI) to aid CMS in planning for the implementation of these new policies. The RFI will help CMS better understand the potential issues researchers may encounter when transitioning their projects into the CCW VRDC or with the change in physical data pricing (see below). CMS will use insights gained from the RFI feedback to finalize the implementation plans related to these new policies.
To learn more about the VRDC, please review the About the VRDC and Requesting Access page on ccwdata.org.
Pricing Changes for Physical Delivery of Research Files:
BACKGROUND: CMS updates the fees for research data requests periodically to account for changes in the costs CMS incurs supporting researcher access to CMS data. In 2021, CMS updated CCW VRDC pricing with the transition to the CCW VRDC Cloud Environment. However, CMS did not update the fees for physical delivery of research files at that time. CMS now needs to update physical data pricing to account for changes to CMS’s costs and to align the physical data pricing approach with the CCW VRDC pricing approach.
NEW POLICY: CMS is implementing a new pricing structure for physical data requests, which will include an annual Project Fee in addition to the current File Dissemination Fees. Fees for access to CMS data are designed to account for the ongoing costs CMS incurs. Costs associated with maintaining the RIF DUA, conducting data privacy and security reviews, and providing Research Data Assistance Center (ResDAC) help desk support are built into a new Project Fee. Costs for building and shipping physical data files are used to calculate the File Dissemination Fees, which are set for each data file.
IMPLEMENTATION: Effective August 19, 2024, researchers with previously approved DUAs that have not yet transitioned to the CCW VRDC will be required to pay a Project Fee annually upon their DUA renewal date. Researchers will continue to pay File Dissemination Fees when physical data files are being sent. The implementation date for these pricing changes may be adjusted based on RFI feedback. If the implementation date is adjusted, CMS will notify researchers in future guidance. For more information on the new pricing structure please click here.