Research Data Request & Access Policy Changes Feedback Opportunity

The Centers for Medicare & Medicaid Services (CMS) continues to evaluate our research data request and access policies, processes, and tools to ensure we are maximizing protections for controlled unclassified information (e.g., personally identifiable information and protected health information) while also enabling important research using CMS data. To further inform our next steps, CMS is seeking additional feedback from the research community. We are also releasing a summary of researcher feedback we received from CMS’ Request for Information released in February 2024.

Accountable Health Communities (AHC) Model

In 2017, the Innovation Center launched the AHC Model to assess whether identifying and addressing Medicare and Medicaid beneficiaries’ health-related social needs (HRSNs) would reduce health care use and costs. The Innovation Center funded entities called bridge organizations to convene a coalition of clinical delivery sites (CDSs) and community service providers (CSPs) to implement the AHC Model in communities across the country. Under the AHC Model, Medicare and Medicaid beneficiaries were screened by participating entities for five core HRSNs, and up to 8 supplemental HRSNs.

The AHC Research Identifiable File (RIF) contains beneficiary-level screening and navigation information about individuals participating in the AHC model. Participants included Medicare and Medicaid enrollees, 94% of whom can be linked to other CMS research files. The remaining 6% cannot be linked to Medicaid or Medicaid claims, since their Medicare and/or Medicaid ID was either missing or incomplete.

The file contains data for the entire AHC Model performance period, which began on May 1, 2017 and concluded on April 30, 2023. Screenings were conducted between May 1, 2018, and January 31, 2023, and navigation services were provided to those with at least one health-related social need (HRSN) and two or more emergency department (ED) visits between May 3, 2018, and April 30, 2023.

The file includes one record per beneficiary screening, with some beneficiaries having more than one screening. For each beneficiary, screening outcomes across domains (e.g. food, housing, safety, transportation, utilities) are reported. Some beneficiaries also have supplemental indicators related to disabilities, education, employment, family and community support, mental health, physical activity, and substance use. For screened items where a need is identified, the file contains information about services offered and their outcomes.

What does this file include? (variable highlights)

  • Person level identifiers (i.e., BENE_ID, MSIS_ID) that researchers can use to link to other CMS research files
  • Sociodemographic variables (e.g., date of birth, race and ethnicity, education, income)
  • HRSN screening results (e.g., HRSNs reported, number of ED visits in the 12 months prior to screening)
  • Navigation case information for those who were eligible and opted in to receive navigation (e.g., navigation case start and end dates)
  • Contacts between navigator and beneficiary who received navigation services (e.g., total number of successful contacts during the navigation period)
  • Navigation outcomes (e.g., beneficiary reported connection with a community service provider, beneficiary had their HRSN(s) resolved)

Special Considerations

Most beneficiaries (94%) in the file have been linked to an identifier (BENE_ID and/or MSIS_ID) that researchers can use to link to other CMS research files. For more information on how to use the data, please refer to the Accountable Health Communities (AHC) Model Data File User Guide.

EPPE Code
AHCMD

2022 and 2023 T-MSIS Medicaid and CHIP Data Now Available

CMS is pleased to announce that updated and preliminary Medicaid T-MSIS Analytic Files (TAFs) for service years 2022 and 2023, respectively, are now available. The TAF research files* contain data on Medicaid and Children's Health Insurance Program (CHIP) beneficiary demographics, program enrollment, service use, and payments. They are designed to meet the diverse research needs of the Medicaid and CHIP data user community.

Carmen Wagener

Carmen Wagener joined ResDAC in November 2024. She has a Bachelor of Science in Microbiology and Immunology from McGill University and a Master of Public Health in Environmental Health and Epidemiology from Emory University. She has previous work experience in tuberculosis transmission dynamics, foodborne disease epidemiology, and cancer clinical research.

DUA Extension and Closure Policy

All DUAs, regardless of how the data is accessed, must be extended annually or closed if you are no longer using the data. DUAs that are not closed or extended within 30 days after the expiration date are in violation of the terms of the DUA and will be forced to close and the data destroyed. An expired DUA is a violation of the agreement and prevents any action on all DUAs for your organization.

TAF Research Considerations: Data Quality, Program Variation, and Disenrollment

Date Recorded

This video is one segment in a series of videos from ResDAC’s Introduction to the Use of the Medicaid and CHIP TAF (T-MSIS Analytic File) Data for Research.

In this presentation, Dr. Shippee discusses common issues that come up when using TAF data for research, including (1) how benefit design influences what is observed in the data (2) data quality and data availability, and (3) disenrollment.

Important Research Data Request & Access Policy Changes

(Updated 09/20/24): In February 2024, CMS announced planned changes to our research data access policy to help protect sensitive beneficiary information from increasing security risks. These changes included transitioning most research studies to the Chronic Conditions Warehouse Virtual Research Data Center (CCW VRDC) and increasing physical data fees to cover growing costs associated with physical data provisioning. CMS released a Request for Information (RFI) to gather feedback from researchers on these changes. 

New Enrollee-level EDGE Data Now Available for Research

CMS is pleased to announce the availability of the Enrollee-Level External Data Gathering Environment (EDGE) Limited Data Set (LDS) for the 2022 benefit year to requesters who seek the data for research purposes. The EDGE LDS contains certain masked enrollment and claims data for on- and off-Exchange enrollees in risk adjustment covered plans in the individual and small group (including merged) markets, in states where HHS operated the risk adjustment program for the 2022 benefit year.