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A New Brief Examines the Collection of Sexual Orientation and Gender Identity (SOGI) Data at the Federal Level and in MedicaidOctober 2021:
Thirteen million people identify as part of a sexual or gender minority (SGM) in the United States, with an estimated 1.17 million who have Medicaid as their primary source of health insurance coverage., While the COVID crisis shed a unique light on the need for more equitable health data collection across all populations, one area in which efforts are still falling short is sexual orientation and gender identity (SOGI) data – especially for those covered by Medicaid. However, change is happening, and states are leading the way.
A new State Health and Value Strategies brief, authored by SHADAC researchers, documents a few examples of SOGI data collection efforts occurring at the federal level and in Medicaid, and highlights the efforts of an Oregon community stakeholder process that identified several key areas for SOGI data improvement.
Unfortunately, there is no current federal data standard for sexual orientation and gender identity. The data standard from the Department of Health and Human Services (HHS), released in 2011, defines the category of “sex” only as biological sex and makes no mention of gender or gender identity. Additionally, when SOGI data collection efforts have been made over the past decade, certain aspects have been more routinely measured than others. For instance, most of the research to-date has focused on how to collect sexual orientation, and very little continues to be known about the best way to collect gender identity. A review in 2016, for example, found that of the 12 federal surveys that collect various aspects of SOGI information, only half of those collect information on gender identity.
SOGI Data in Medicaid
The collection of SOGI data in Medicaid is even less common than in federal surveys. SHADAC’s review of state Medicaid applications identified only two states that provided applicants an opportunity to select something other than “male” or “female” when asked to indicate their sex/gender (these terms were used interchangeably to refer to biological sex). Connecticut’s paper application has an open-text write-in option for “gender.” Oregon asks applicants to indicate their “sex assigned at birth” as well as their “gender identity.”
Improving the Collection of SOGI Data – The Oregon Model
There are still many unresolved methodological and conceptual issues when it comes to the collection of SOGI information, and very limited research assessing the validity of SOGI data specifically collected via the Medicaid application process. But one state leading the way in this effort is Oregon.
In 2018, the Oregon Health Authority (OHA) Office of Equity and Inclusion convened a SOGI Data Collection Workgroup, composed of stakeholders who interact with the Lesbian, Gay, Bisexual, Transgender, Queer, and other (LGBTQ+) community and health systems, many of whom also identify as LGBTQ+ themselves, to develop a set of SOGI data standards. The group recommended a key set of five demographic questions and response options, some open-ended for the respondent to be able to write an answer and some with the ability to check more than one categorical box, if appropriate. Options were also given for the respondent to say that they either did not want to answer or did not know what the question was asking. The workgroup also identified that a set of additional questions were needed in order to ensure respectful communication.
Soon these standards will be put into practice. A bill requiring OHA and the Oregon Department of Human Services to expand their existing race, ethnicity, language and disability data collection standards to include SOGI was recently passed by the state legislature. The state plans to convene a rule-making advisory committee in the winter of 2022 to finalize SOGI standards using the work group’s draft standards as a starting point.
There continues to be very limited research assessing the validity of SOGI data specifically collected via the Medicaid application process. Absent any type of federal standard, states looking to explore different options to address their SOGI data collection gaps may need to modify SOGI questions depending on a variety of factors including the age, cultural background, and language preferences of their target population; as well as be mindful of the evolving terminology used to identify gender identity. Oregon serves as an excellent model for how to undertake a thoughtful community stakeholder process that can inform efforts to establish new data collection on a topic that is fluid and rapidly changing, yet vitally important for the health of Medicaid populations.
For more detail about how Oregon approached the development of its SOGI data standards, as well as information on current federal and Medicaid SOGI data collection efforts, click on the image above to read the full brief.
 Conron, K.J. & Goldberg, S.K. (April 2020). LGBT people in the US not protected by state non-discrimination statutes. UCLA School of Law, The Williams Institute. https://williamsinstitute.law.ucla.edu/wp-content/uploads/LGBT-ND-Protections-Update-Apr-2020.pdf
 3. Conron, K.J. & Goldberg, S.K. (January 2018). Over half a million LGBT adults face uncertainty about health insurance coverage due to HHS guidance on Medicaid requirements. UCLA School of Law, The Williams Institute. https://williamsinstitute.law.ucla.edu/wp-content/uploads/LGBT-Medicaid-Coverage-US-Jan-2018.pdf