Collection of Sexual Orientation and Gender Identity Data
This brief summarizes recent changes to how information about individuals who are lesbian, gay, bisexual, transgender, queer, intersex, or outside the gender binary (LGBTQI+) is collected at the federal level and in Medicaid; and highlights efforts in Oregon to improve the collection of sexual orientation and gender identity (SOGI) 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. One barrier to this is the lack of federal data collection standards related to SOGI data collection. There has been some movement toward consensus on how to best ask SOGI questions, as well as activity at the federal level aimed at improving SOGI data collection in federal surveys and across federal agencies. This brief summarizes how SOGI data is collected at the federal level and on the Medicaid application forms of all 50 states.
Key Findings
- The overwhelming majority of states currently provide only binary “male” and “female” response options on their Medicaid applications.
- Only six states provide some type of alternate response, including options such as “non-binary” or “transgender.”
- Some states, such as Oregon, have pursued legislative action to improve SOGI data collection.
Conclusion
There is very limited research assessing the validity of SOGI data specifically collected via the Medicaid application process. In the absence of federal action, states will need to explore how to address current SOGI data collection gaps on their own.
Disclaimer: This issue brief is being updated by SHVS to incorporate new SOGI questions on the Marketplace application through HealthCare.gov. An updated version will be posted here when available. The Centers for Medicare & Medicaid Services announced that starting November 1, 2023, individuals applying for coverage through HealthCare.gov will be asked questions on the topic of SOGI data. These questions will be optional and asked of all individuals ages 12 and older who apply for coverage. Details on the new questions can be found here.
About the Authors
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.
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