Sexual Orientation and Gender Identity Data

The Issue

Medicaid is an important source of coverage for LGBTQI+ populations, but few states collect data that can be used to understand and improve health for these individuals. In the fall of 2023, the Centers for Medicare & Medicaid Services (CMS) added new SOGI questions to the application used by HealthCare.gov and released guidance for states who want to add the same questions to their Medicaid and CHIP applications. This brief summarizes how SOGI data is currently collected on the Medicaid application forms of all 50 states and presents several considerations for states as they look to improve their collection of SOGI data in Medicaid.

Key Findings

• Very few states are currently collecting SOGI information, and no states are collecting the data in line with the new CMS recommended format.
• Some states, such as Oregon, have pursued legislative action to improve SOGI data collection.
• States considering implementing CMS’ recommended SOGI questions will need to carefully consider important implications, including privacy and confidentiality concerns, conflicts with recommended best practices, and potential misalignment with other state data collection requirements.

Conclusion

States should take advantage of the opportunity CMS has provided to add SOGI questions to Medicaid applications.

About the Author/Grantee

State Health and Value Strategies (SHVS) assists states in their efforts to transform health and healthcare by providing targeted technical assistance to state officials and agencies. The program is a grantee of the Robert Wood Johnson Foundation, led by staff at Princeton University’s School of Public and International Affairs. The program connects states with experts and peers to undertake healthcare transformation initiatives. By engaging state officials, the program provides lessons learned, highlights successful strategies and brings together states with experts in the field. Learn more at www.shvs.org.

This issue brief was prepared by Emily Zylla and Elizabeth Lukanen. The State Health Access Data Assistance Center (SHADAC) is an independent, multi-disciplinary health policy research center housed in the School of Public Health at the University of Minnesota with a focus on state policy. SHADAC produces rigorous, policy-driven analyses and translates its complex research findings into actionable information for states. Learn more at www.shadac.org.