Without data to identify disparities, critical gaps in health care access and quality are all too easily overlooked or ignored. For decades, people who identify as lesbian, gay, bisexual, transgender, queer, or additional sexual and gender identities (LGBTQ+) have faced barriers to health care caused by persistent homophobia, transphobia, and systemic discrimination. However, despite these long-documented health disparities and inequities impacting LGBTQ+ communities, sexual orientation and gender identity (SOGI) data has historically not been recognized or collected in Medicaid data sets.

Now federal momentum is providing new options for states to better understand the use and outcomes of LGBTQ+ people applying for or enrolling in Medicaid. A November 2023 bulletin from the Centers for Medicare & Medicaid Services (CMS) provides three new optional questions states may use to collect SOGI data from Medicaid applicants.

By better understanding population health trends among Medicaid members, Medicaid agencies may be better able to identify important differences in experiences accessing and utilizing health care. Additionally, analyzing health outcomes with SOGI data may help policymakers better understand and address differences in health care quality and health outcomes. However, because this data represents such sensitive personal information, there are critical factors for Medicaid agencies to consider before collecting SOGI data.

What should states consider when collecting SOGI data?

Collecting SOGI data presents states with several ethical and logistical questions. Sexual and gender identity represent complex, personal data. In addition to the considerations CMS includes in its bulletin, state officials can reflect on the following questions in determining their readiness to collect SOGI data.

• How will the data be used to identify and address health disparities? As agencies become better able to analyze population health trends using SOGI data, they are more equipped to actively identify and address health disparities impacting LGBTQ+ members. But before collecting SOGI data, states should clarify their intended use of the data. The state can then explain to applicants directly on application forms exactly why it collects SOGI data and how it plans on using the information. Determining the motivation for collecting SOGI data and clearly communicating how the data will and will not be used can increase response rates.
• How will staff collecting, storing, and reviewing the data receive ongoing training on best practices? LGBTQ+ people experience frequent discrimination interacting with public benefit programs and health care systems, especially LGBTQ+ people of color. In order to improve the experience of all LGBTQ+ members, Medicaid agencies can consider requiring that staff who interact with members, both current and prospective, participate in cultural competency trainings highlighting best practices for the collection and use of SOGI data.
• How will SOGI data collection impact coverage of medical care for transgender and nonbinary members? To minimize fraud, waste, and abuse, many state Medicaid agencies and health plans have automatic administrative denials in place, sometimes called “gender edits,” for specific procedures. For example, if a member’s data notes their sex as “male,” they may be automatically denied coverage for pap smears even if the member has a cervix. Such denials impact the ability of transgender and nonbinary members to receive medically necessary care, in particular. While CMS continues to require a binary sex question that could continue to be used for these automatic denials, state Medicaid agencies can explore how expanding SOGI data collection without first removing or revising “gender edits” may negatively impact and complicate care for transgender members.

Who may be excluded with the new SOGI-related questions?

Collecting data on identities as complex and evolving as sexual orientation and gender identity is difficult. The three questions from CMS offer a good first step for states to begin collecting SOGI data, but they may exclude or alienate some members of the LGBTQ+ community. Because of this, Medicaid funding for resources and services supporting LGBTQ+ communities should not be tied to population estimates stemming from Medicaid applications.

• LGBTQ+ children and youth: While some children know their gender and sexuality as young as 10 years old, many LGBTQ+ youth continue to face violence, rejection, and discrimination when coming out to their families. Efforts to collect SOGI may result in an undercount of the true population of LGBTQ+ youth as the respondents may be uncomfortable self-identifying to their parents or guardians. Fortunately, as outlined in CMS’ bulletin, members can update their responses at any time, and have the option of changing or removing previous responses. This will greatly benefit LGBTQ+ youth who may desire to change their responses throughout their time enrolled in Medicaid.
• LGBTQ+ older adults: Because of systemic discrimination, LGBTQ+ adults (those age 50 years and older) experience greater rates of poverty and are more likely to be enrolled in Medicaid. Many LGBTQ+ older adults also frequently go “back in the closet” later in life in an effort to minimize the experiences of homophobia and transphobia. Because of this, LGBTQ+ older adults may be hesitant to self-identify when completing the enrollment application. As mentioned above with LGBTQ+ youth, funding for resources and services supporting LGBTQ+ older adults should not be tied to population estimates based on Medicaid data.
• Intersex individuals: An estimated 1.7 percent of people are born with intersex traits and this population has historically faced discrimination when accessing health care. Understanding their experiences and needs is critical for advancing health equity. While the current model application includes one question on sex assigned at birth, this question overlooks the experience of many intersex people who are assigned a binary sex at birth only to later learn of their intersex identity. To address this concern, Oregon Health Authority’s Office of Equity recently recommended separating these questions to allow for inclusion of both sex assigned at birth and legal sex.
• Non-English speakers: Questions on sexual and gender identity are nuanced and vary across languages and cultures. There is limited research on best practices for asking SOGI questions in languages other than English. This may result in questions that confuse non-English speaking respondents or limit non-English speakers’ ability to self-identify. Additionally, terms in other languages and cultures around gender and sexuality don’t always have clear translations in English.

What’s next?

CMS’ introduction of optional SOGI data questions is a step toward greater inclusion of LGBTQ+ communities and their health care needs. Collecting SOGI data may help policymakers and advocates better understand and address the health inequities and disparities LGBTQ+ communities face. The implementation of these questions may also facilitate identification of best practices to ensure equitable approaches to collecting, storing, and using SOGI data.

It is important to ensure next steps occur in partnership with LGBTQ+ communities — especially those outlined above — to confirm data collection and sharing data is balanced with the need for privacy and inclusion and that programs and policies identified to address health disparities align with community needs, preferences, and opportunities.