Issue Briefs | Oct 6, 2021

Collection of Sexual Orientation and Gender Identity (SOGI) Data: Considerations for Medicaid and Spotlight on Oregon

Thirteen million people identify as part of a sexual or gender minority (SGM) in the United States, and an estimated 1.17 million of those SGM adults (age 18-64 old) have Medicaid as their primary source of health insurance. Although there has been increasing recognition over the last decade that sexual orientation and gender identity (SOGI) are important determinants of health, the recent coronavirus (COVID-19) crisis has amplified the stark health disparities that many vulnerable populations face. Despite gaps and inconsistencies in state and federal reporting on COVID-19, data continues to show that Black, Indigenous, and other people of color (BIPOC) have been disproportionately impacted by both higher risks of infection and poorer health outcomes. However, health-related data about SGM populations is particularly scarce.

Although several states, such as California, Pennsylvania, Rhode Island, and the District of Columbia (D.C.) routinely collect SOGI data during COVID-19 testing, our review of states’ reporting of COVID-19 data by demographic categories did not reveal any state that is reporting case, death, hospitalization, testing, or vaccine administration data by sexual orientation or gender identity. Lack of health data for SGM populations is not unique to the COVID-19 crisis. There remains a lack of data on the characteristics and well-being of these groups in general. For example, our recent analysis found that all state Medicaid agencies collect self-reported demographic data including race, ethnicity, and language (REL) from applicants during the eligibility and enrollment process. However, SOGI data is much less common. This persistent health-data gap is a major barrier for understanding and improving the health of SGM populations.

The objective of this brief is to document how information describing SGM populations is currently collected at the federal level and in Medicaid. The brief also spotlights Oregon’s recent efforts to improve the collection of SOGI data, and present several issues that states should consider as they look to improve their collection of SOGI data in Medicaid. The information presented here draws from the State Health Access Data Assistance Center’s (SHADAC) review of 50 states’ paper Medicaid applications and 33 states’ online Medicaid applications and federal research findings. While this issue brief outlines current data collection efforts and some limited research on how to collect this information, it does not make judgments on the best way to collect this data. SHADAC believes that more comprehensive and current research and guidance on this topic is needed. For example, the current ways SOGI data is collected in federal surveys does not always align with recommended best practices from advocates. Additionally, some of the research on this topic at the federal level, started under the Obama administration, is already out of date due to the fast-changing nature of social customs and evolving language around this topic.  The information presented here draws from the State Health Access Data Assistance Center’s (SHADAC) review of 50 states’ paper Medicaid applications and 33 states’ online Medicaid applications7 and federal research findings. While this issue brief outlines current data collection efforts and some limited research on how to collect this information, it does not make judgments on the best way to collect this data. SHADAC believes that more comprehensive and current research and guidance on this topic is needed. For example, the current ways SOGI data is collected in federal surveys does not always align with recommended best practices from advocates. Additionally, some of the research on this topic at the federal level, started under the Obama administration, is already out of date due to the fast-changing nature of social customs and evolving language around this topic.