3

Data on Sexual Orientation and Gender Identity: Collection and Use in the Clinical Practice of Medicine

Recent advances in electronic health records (EHRs) and health information technology provide opportunities to increase the visibility of transgender and gender diverse (TGD) patients and patients with variations in sex traits (VSTs) through the collection of sexual orientation and gender identity (SOGI) patient data. SOGI data collection—whereby health care providers and patients can record sexual orientation, gender identity, legal sex, sex recorded at birth, and similar information in individual patient charts—is a key strategy for reducing the many health disparities faced by LGBTQ+ populations. For patients who are TGD or have VSTs, data collection that involves asking for a patient’s gender identity and sex recorded at birth can enhance meaningful dialogue during clinical encounters, aid in clinical decision making, promote appropriate preventive screenings, reduce inequitable and discriminatory health care practices, and foster respectful and patient-centered long-term care.

In recent years, new federal policies—including mandates for certified EHR systems to have the capacity to record SOGI demographic data—have been major drivers of the expansion of SOGI demographic data collection among EHR vendors and across the health care system. Yet despite the importance of collecting SOGI data and the capacity for EHRs to do so, uptake of the collection and documentation of SOGI data by health care systems and providers is suboptimal. The persistent lack of routine data collection on sexual orientation, gender identity, and variations in sex traits is a substantial roadblock to the health and well-being of sexual and gender minorities.

This chapter examines the importance of collecting SOGI data within health care settings, best practices for collecting these data, structural barriers to collecting these data, and the future of SOGI data collection within medical records. Given that one of the important reasons for collecting SOGI data in medical records is to help combat discriminatory health care provided to sexual and gender minorities, the chapter begins with an examination of the uneven health care delivery experienced by TGD people and people with VSTs.

UNEQUAL CARE DELIVERY IMPACTING TRANSGENDER AND GENDER DIVERSE PEOPLE AND PEOPLE WITH VARIATIONS IN SEX TRAITS

Sex and gender bias and discrimination in health care—unequal treatment by providers for patients who are TGD or have VSTs—is a well-documented experience. Numerous studies demonstrate that TGD people experience cascading patterns of discriminatory experiences in health care, ranging from providers having limited clinical understanding of transgender health to overt refusals of care. These studies, spanning decades and care settings (including primary care, mental health care, sub-specialty care, and social service settings), show how discriminatory care practices adversely affect access to and quality of health care, leading to poor physical and mental health outcomes among TGD people (Jackson et al., 2008; Maragh-Bass et al., 2017a; Poteat et al., 2013; Seelman et al., 2017). People with VSTs experience similar marginalization and discrimination in their health care, due largely to the stigma of not conforming to providers’ binary views of sex (Crocetti et al., 2021; Haghighat et al., 2023). According to a 2020 survey from the Center for American Progress, people with VSTs, compared with LGBTQ+ people who do not have VSTs, experience higher rates of stigma and discrimination (69 percent vs. 35 percent) and are more likely to avoid going to the doctor or engaging in other behavior that could expose them to discriminatory treatment (Medina and Mahowald, 2021).

In a second survey from the Center for American Progress, conducted in 2022, 21 percent of transgender and nonbinary respondents (including 28 percent of transgender and nonbinary respondents of color) reported that a health care provider had refused to provide reproductive or sexual health services because of their gender identity (Medina and Mahowald, 2021). More than half (55 percent) of respondents with VSTs reported refusal of care because of their sex characteristics. These experiences were notably more prevalent among TGD individuals and individuals with VSTs who also had a disability. This finding echoes those of previous studies that show

higher rates of discrimination against TGD individuals with disabilities (Kattari et al., 2017, 2020). While these studies use a broader definition of disability than SSA’s, they still indicate the discrimination faced by TGD/VST populations with serious chronic health needs. Racially minoritized TGD people also experience higher rates of discrimination in health care settings (Gonzales and Henning-Smith, 2017; Grant et al., 2011; Kattari et al., 2015).

The downstream impacts of this discrimination include patients with TGD or VST lived experience postponing or avoiding needed medical care because of medical providers’ disrespect or overt discrimination and the fear of such mistreatment repeating itself in future clinical encounters (Feldman et al., 2021; MacDougall et al., 2023; Romanelli and Lindsey, 2020; Streed et al., 2017; White Hughto et al., 2015). In the 2015 U.S. Transgender Survey, 33 percent of transgender respondents reported having had negative experiences with health care providers, and 23 percent reported avoiding necessary medical care for fear of being mistreated as a transgender person (James et al., 2016). These findings are consistent with those of a review by Jaffee and colleagues (2016), which found that nearly one-third (30.8 percent) of transgender people delayed or did not seek medical treatment because of discrimination (Jaffee et al., 2016). Repeated incidents of discrimination in health care settings may also contribute to coping-motivated substance abuse, and even suicide (Glick et al., 2020; Kidd et al., 2018; Romanelli et al., 2018; Zollweg et al., 2023).

TGD people also face other forms of structural stigma that impact their ability to receive quality health care, including “societal-level conditions, cultural norms, and institutional policies that constrain the opportunities, resources, and wellbeing of the stigmatized” (Hatzenbuehler, 2014; Price et al., 2024). For TGD people, this stigma may result in a lack of legal protections, as well as discriminatory laws, policies, and/or attitudes. For instance, growing and evolving restrictions on access to gender-affirming medical care have a negative impact on the physical and mental health of TGD people (Abreu et al., 2022; Hughes et al., 2021; Poteat and Simmons, 2022; Velasco et al., 2022).

BENEFITS OF SOGI DATA COLLECTION

Traditionally, data on sex and gender collected by health care providers and institutions place patients into one of two categories based on “administrative sex”: male or female (Hines et al., 2023). The constrained selection of either “male” or “female” within medical encounters imposes the idea of a societal “norm” whereby everyone falls neatly into one of two categories. However, this binary categorization does not reflect the reality of sex and gender variations, and so can render TGD people and people with VSTs invisible and leave them with the sense that they are non-normative and, perhaps, unwelcome. When medical records and clinical encounters do not provide the opportunity for patients to describe important characteristics about their identity, or body and experiences—for example, to state their gender as different from their sex recorded at birth, to declare a gender identity that does not conform to expectations

based on sex recorded at birth, or to describe variations in sex traits—patients cannot receive the culturally responsive, patient-centered services they need.

While many structural factors contribute to discriminatory health care, one important way providers, health systems, and social programs can combat discrimination and advance equity is through the collection of SOGI data in medical records. Giving TGD patients and patients with VSTs the ability to disclose SOGI data to health care providers can be enormously beneficial to these patient populations as it provides clinicians and staff with more accurate information and has the potential to make the health care environment more welcoming—and, in turn, opens the door to a more trusting patient–provider relationship. In short, SOGI data collection can promote inclusivity, increase patient comfort with providers, reduce misgendering, reduce health care avoidance, and enhance the patient experience (Hines et al., 2023; Kronk et al., 2022; Streed et al., 2020).

SOGI data collection arms providers with critical data they need to inform decision making for vulnerable patients at all levels of care: from preventive screening to chronic disease management. Without knowing a patient’s gender identity and sex recorded at birth, for example, a provider may not flag that a transgender man who retains a cervix should be offered cervical cancer screening. Likewise, without asking about VSTs, a health care provider may not appreciate important health conditions that may disproportionately affect a patient, such as chronic pain or infertility. Asking patients about their gender identity and sex recorded at birth thus allows providers to get to know their patients and allows them to offer the patient-centered services TGD people and people with VSTs need and deserve (National LGBTQIA+ Health Education Center, 2022). Additionally, when SOGI data collection includes asking about pronoun(s) and name(s), providers can engage in respectful conversations with their patients, all of which enriches the patient–provider relationship, improves care delivery, and enhances patient satisfaction (Streed et al., 2020).

SOGI documentation has specific advantages within pediatric primary care practices. When pediatricians have these data for their patients, they can make more informed decisions, offer referrals for psychosocial support, and encourage gender identity acceptance among family members and caregivers (Goldhammer et al., 2022).

Outside of clinical care, SOGI data collection is an indispensable tool for helping researchers, policy makers, and advocates understand and address challenges facing communities that are diverse with respect to sexual orientation and gender identity (NASEM, 2022). Chapter 4 of this report looks at SOGI data collection in federal surveys and recent strides toward improving such data collection across federal agencies.

Patient Attitudes toward SOGI Data Collection

Research shows that most patients endorse the collection of SOGI data in medical records. One survey of a racially diverse group of patients (N = 301, including 15.6 percent of the respondents identifying as transgender) across four community health centers found that most understood the importance of answering SOGI questions and were willing to answer them in a health care setting (Cahill et al., 2014). The two-step question asked in the study (“What is your current gender identity?” and “What sex were you assigned at birth on your original birth certificate?”) was widely understood by survey respondents, and 86 percent reported willingness to answer the gender identity portion of the question, while 84 percent reported willingness to answer the sex recorded at birth portion. Respondents of all ages endorsed the importance of asking SOGI questions, with transgender and cisgender respondents reporting similar comfort levels with the collection of gender identity data (Cahill et al., 2014). Another study of the attitudes of heterosexual and cisgender patients toward SOGI data (N = 491) found that 97 percent believed SOGI data collection to be an acceptable part of routine clinical intake forms (Rullo et al., 2018). Other surveys have found similarly high patient willingness to complete SOGI data collection within EHRs (Bjarnadottir et al., 2017; Maragh-Bass et al., 2017a; Ruben et al., 2017).

Beyond questions on gender identity and sex recorded at birth, TGD patients may prefer to have additional identification documented in their EHRs. For example, one survey of transgender youth (aged 12–26 years, N = 204) found that 79 percent wished to have their preferred name and pronouns documented in the EHR, these details being critical to cultivating a respectful and affirming interaction between provider and patient (Sequeira et al., 2020). When providers refer to patients by their correct name (i.e., their chosen and presently used name) and pronouns, this is an added step in ensuring that patients feel seen, heard, and respected in their identities.

However, other research describes the possible negative implications of SOGI data disclosure in health care settings. For example, in a qualitative study of 30 transgender adults, participants reported that disclosing transgender status resulted in increased stigma and poorer care (e.g., participants were not misgendered until they disclosed receipt of gender-affirming hormone therapy; providers began asking stigmatizing questions only after learning of TGD status) (Alpert et al., 2023). Participants in this study reported feeling reticent about sharing SOGI data to avoid such negative clinical encounters. Other studies have reported a similar phenomenon: for example, studies show patients may receive invasive questioning when gender identity is disclosed or providers may misattribute

medical concerns as being a result of the patient’s gender identity or gender-affirming care, leading to reduced access to needed health care interventions (Wall et al., 2023).

The decision to provide SOGI data is often complicated, but research shows TGD patients are more likely to disclose where they perceive the information is directly relevant to their health concern, they are told why SOGI collection is needed, and providers give assurances of confidentiality (Maragh-Bass et al., 2017b). In addition, TGD people report a greater willingness to disclose SOGI data where there are a wide range of response options that allow for more accurate reflection of identities and experiences (Puckett et al., 2020).

SOGI DATA COLLECTION: BEST PRACTICES

Given its many benefits to patients, health equity, and clinical care, best practices call for the collection of SOGI data in medical records. The National Academy of Medicine (NASEM, 2022), The Joint Commission (2011), the National Science and Technology Council (NSTC, 2023), and Healthy People 2030 (OASH, n.d.), among others, have all called for the collection of SOGI data in routine patient care.

For data collection related to gender identity, researchers and advocates call for a two-step gender identity question, like that posed in the study referenced above (Cahill et al., 2014), to identify transgender and nonbinary people in health care settings (Kronk et al., 2022; NASEM, 2022; National LGBTQIA+ Health Education Center, 2022; Thompson, 2021). The two-step gender identity question is a pair of questions asked in sequence, one asking about current gender identity and the other about sex recorded at birth (sometimes referred to as “sex assigned at birth”). Table 3-1 provides three examples of the two-step question.

While gender identity information can be obtained with a one-step question (e.g., by asking “Are you male, female, or transgender?” or “Do you consider yourself transgender?”), some transgender people describe their gender identity as either “male” or “female,” so the one-step question does not always identify people with transgender lived experience (Schilt and Bratter, 2015; Tate et al., 2013). Furthermore, listing various gender identities—transgender woman, transgender male, transfeminine, transmasculine, etc.—in a one-step question may not comport with terminology preferred by the individual, and can enforce a level of distinction between transgender and cisgender individuals that is unnecessary and can feel alienating for TGD people (Kronk et al., 2022).

The two-step question method is considered a better proxy for gender- and/or sex-related information than any one-step question alone (Kronk et al., 2022; NASEM, 2022). With the two-step method, when a patient

TABLE 3-1 Examples of a Two-Step Question on Gender Identity and Sex Recorded at Birth

NOTE: Although some literature states that best practices are to ask the gender identity question first before the sex recorded at birth question, the questions presented above are presented in the order they appear within these sources.

SOURCES: Kronk et al., 2022; NASEM, 2022; National LGBTQIA+ Health Education Center, 2022.

selects, for example, “female” as gender identity and “male” as sex recorded at birth, health care providers can understand that the patient is transgender without the patient having to specifically select “transgender” on health forms. Researchers estimate that without a two-step question for gender identity, roughly one-quarter of transgender patients would not be clinically visible (Dubin et al., 2022). The two-step approach also helps count cisgender patient populations accurately because it allows for separate counts of cisgender men and cisgender women (NASEM, 2022). Importantly, because the two-step method allows for more accurate recording of sex and gender identity compared with the traditional “administrative sex” categories of male/female, providers can use these data to inform appropriate clinical decision making. For example, the Veterans Health Administration’s (VHA’s) EHR system uses data on sex recorded at birth to guide health screenings (e.g., cervical cancer screening for transgender men) and to help determine laboratory ranges and medication dosing (VHA, 2022).

Best practices call for medical records to offer enough categories so individuals do not have to select an “other” category; the inclusion of terms—for example, “X” as a response under sex recorded at birth or “nonbinary” as a category for gender identity—communicates to patients that they are included and welcome (Kronk et al., 2022; Puckett et al., 2020). In addition, providing a free-text response option, such as “I use something else,” allows individuals to use their own terminology to accurately reflect their identity and experience. Health care organizations may also prefer to modify response options to better fit the populations they serve. For example, for an organization that serves a large number of American Indians/Alaska Natives, it may be appropriate to include “Two-Spirit” as an option for gender identity (NASEM, 2022; National LGBTQIA+ Health Education Center, 2022), as the Indian Health Service does on its patient intake forms (IHS, 2023). Another example would be to include the terms “raerae” or “māhū” when serving a Polynesian community, as these are culturally specific terms that recognize a third gender (Ford and Coleman, 2023). Many cultures and regions have culturally specific terminology, which points to the importance of including free-text options so individuals have the autonomy to identify themselves accurately.

Occasionally, medical records may include variations in sex traits—sometimes using the term “intersex” or “differences of sex development”—under the gender identity or sex recorded at birth question. However, people with VSTs have a range of gender identities, just like the general population; thus, some people with VSTs may consider their gender to be “intersex,” whereas others identify as female, male, nonbinary, or a different gender. In addition, as the process of assigning gender at birth can be highly complex for many people born with VSTs, individuals may have a sex recorded on their birth certificate that differs from their current sex and/or gender

TABLE 3-2 Examples of Questions That Ask Patients About Variations in Sex Traits

SOURCE: Adapted from NASEM, 2022.

identity. For these reasons, instead of listing “intersex” along with other categories in the two-step question, it may be better to capture identifications related to VSTs through free-text response options, such as “another sex, please specify” or “another gender, please specify” (Kronk et al., 2022).

Providers may also record VSTs by using a separate question. Table 3-2 offers examples of questions that ask about patients’ VSTs.

Best practices also call for medical records to record patient name¹ and pronoun-related information, to update this information regularly as part of routine practice, and to use algorithms to automatically populate provider notes with a person’s selected pronouns (Alpert et al., 2023; Goldhammer et al., 2022; Kronk et al., 2022). Kronk and colleagues (2022) offer a comprehensive example of pronoun selection within the medical record, as shown in Box 3-1.

Finally, best practices call for all gender identity data to be modifiable by patients without the consent of their provider (Kronk et al., 2022). If EHR systems or institutional policies allow only providers or office staff to change these data, patients may be put in the uncomfortable position of having to out themselves to individuals they do not know or trust, and, where providers have not had appropriate education in caring for TGD patients and patients with VSTs, it can lead to the entry of incorrect or transphobic information in the EHR (Kronk et al., 2022). Finally, as the

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¹ Allowing patients to record their chosen and presently used name helps avoid the distress TGD people or people with VSTs may feel when referred to by a former name (“dead name”).

decision to provide SOGI data may be complicated (given privacy concerns or dynamics of the patient–provider relationship, as explored below), best practices call for patients to have the ability to choose whether to disclose SOGI data and provide consent on how their SOGI data might be used.

BARRIERS TO SOGI DATA COLLECTION

Despite established best practices and documentation of patients’ willingness to answer SOGI questions, significant gaps in SOGI data collection remain across the U.S. health care system. Research has identified several systemic barriers—including lack of requirements to record and report SOGI data, provider misconceptions, lack of provider education/training, institutional barriers, and privacy concerns—that prevent the U.S. health care system from achieving the many benefits ascribed to SOGI data collection. This section examines these barriers.

Lack of Federal Requirements

One significant barrier to SOGI data collection in the United States is the fact that there are few requirements for the collection and reporting of SOGI demographic data.

Increasingly, more federal health care programs are encouraging SOGI data collection, most often by including data fields for gender identity and sex recorded at birth in program enrollment forms. Yet with the exception of a mandate from the Health Resources and Services Administration (HRSA) for federally qualified health centers (FQHCs) to collect and report SOGI data for patients, SOGI data collection within federal health care programs is optional, meaning that patients do not have to answer these questions and providers do not have to ask them. Chapter 4 examines the current state of SOGI data collection policies across the federal health care system, describing these and other ongoing SOGI data collection efforts in detail. As described in Chapter 4, most federal efforts to advance SOGI data collection are only recently under way or are still in the proposal state. While SSA (n.d.) does not ask about gender identity or sex recorded at birth or other SOGI data on applications for disability benefits or in beneficiary surveys, it does allow people to change their sex identification on their Social Security records. SSA does not require people to support a change in sex identification with any medical or legal evidence, but sex identification must be either male or female.²

Providers who work outside of federal health care programs and facilities are increasingly able to collect and record SOGI data, but there are no federal requirements for them to do so. Since 2018, the Centers for Medicare & Medicaid Services (CMS) and the Office of the National Coordinator for Health Information Technology (2023) have required EHR developers and vendors to allow patients and providers to record SOGI data in EHRs as part of certification under the Meaningful Use incentive program (HHS, 2015). Meaningful Use certification does not require providers or health care institutions to collect SOGI data; it requires only that certified EHR technologies have the ability (i.e., the data fields) to record these data. In addition, certification requirements do not specify which SOGI data questions should be in place or what response options should be available to patients. As a result, there is great variability in whether providers turn on SOGI data capabilities in EHRs and if so, what questions they ask patients.

Indeed, without requirements in place, health care providers and systems routinely fail to collect and record SOGI data. A survey of more than 6,000 staff members and leaders across 18 health care organizations revealed that more than half of clinicians (55.4 percent) “rarely or never”

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² SSA (n.d.) states: “Currently, our record systems require a sex designation of female or male, and cannot accommodate a non-binary or unspecified sex designation, such as X. We are examining ways to address this in the future.” SSA disability application forms contain a free-text “remarks” space for applicants to include additional details about any aspect of their disability application. Applicants could use the remarks section of the application form to provide details about gender identity or sex recorded at birth, but the committee does not know how frequently applicants enter such information.

engaged patients in discussion about sexual orientation, and almost two-thirds (71.9 percent) failed to engage in discussions about gender identity (Goldhammer et al., 2018). A survey of 153,827 older adults discharged from one hospital showed that 67.6 percent of records were missing data on sexual orientation, and 63 percent of records lacked data on gender identity (May et al., 2023). Where reporting is mandated, levels of SOGI data collection are higher, although persistent gaps remain: a review of data from 1,297 FQHCs serving more than 30 million patients revealed that, 6 years after HRSA mandated SOGI data collection and reporting, sexual orientation data were missing from 29.1 percent of patient records and gender identity data from 24 percent (Liu et al., 2023). It is unclear whether these gaps exist because providers are not asking the questions or patients are unwilling to disclose. However, previous research has found similar gaps in data collection among FQHCs, although SOGI data collection at FQHCs has increased substantially since 2016 (the year reporting requirements began) (Grasso et al., 2019; McDowell et al., 2022).

Even institutions that are otherwise recognized as providing quality care to LGBTQ+ patients find it difficult to adapt to recording SOGI data in EHRs. In an analysis of Rush University Medical Center—recognized by the Human Rights Campaign’s Health Equality Index as being a national leader in the care of LGBTQ+ patients—researchers found that only one-quarter of patient records included gender identity data (Thompson et al., 2021). Likewise, a review of charts at New York University Langone Health (an urban quaternary care academic hospital system that provides gender-affirming surgery and pediatric gender-affirming care, has a child and adolescent mental health gender clinic, and conducts staff training in SOGI data collection) revealed that almost two-thirds of transgender patients (63.05 percent) had no SOGI demographic data attached to their record that would identify them as a gender minority (Dubin et al., 2022).

Provider Misconceptions

Another factor contributing to insufficient SOGI data collection is providers’ frequent misconception that their patients do not want to answer SOGI questions. Research finds that patients and providers have discordant views on the appropriateness of SOGI questions in clinical settings: the majority of patients are willing to provide SOGI information, but the majority of providers assume that SOGI questions will make their patients feel uncomfortable or that patients will find these questions offensive (Callahan et al., 2015; Goldhammer et al., 2018; Haider et al., 2017; Maragh-Bass et al., 2017a; Mullins et al., 2020). Providers may also assume that SOGI data are relevant only to certain populations—for example, patients who report sexual health complaints—and not medically relevant to other patient encounters, believing

that quality clinical care can be delivered to the majority of patients on the basis of administrative sex (Goldhammer et al., 2018; Kodadek et al., 2019; McClure et al., 2022; Newsom et al., 2022). Providers may also assume that gender identity is static and may not understand the importance of asking SOGI questions over time (Davison et al., 2021).

Even where providers understand the need for documenting patient SOGI in theory, they may prioritize other inquiries they deem more relevant to clinical decision making, such as those relevant to patients’ behaviors and experiences rather than to their sexual orientation or gender identity (Dichter et al., 2018). In a qualitative study entailing in-depth individual interviews of health care providers, providers stated that one reason they do not prioritize SOGI data collection is that understanding whether their patient has a sex recorded at birth that is different from their gender identity is clinically necessary information only in certain circumstances (Dichter et al., 2018). While this may be true, it points to another misconception among providers—that clinical decision making is the only reason for collecting SOGI data. This view disregards other important benefits of obtaining and documenting these data, such as building an inclusive and affirming environment for patients.

Lack of Provider Education and Training

Provider misconceptions indicate a lack of education and training in the importance of SOGI data for clinical use and patient care. Providers often lack formal education focused on populations for whom SOGI data are particularly important. Indeed, conventional medical curricula do not include adequate education on treatment and care for TGD people (Haymer, 2014; Jelinek et al., 2020; Safer et al., 2016). One study of 176 undergraduate medical schools in the United States and Canada demonstrated a median time of 5 hours of dedicated content related to sexual and gender minorities across the full curriculum (Obedin-Maliver et al., 2011). Where such content was offered, few schools presented information beyond sexual history, and only 11 of the 176 (8.3 percent; 95 percent confidence interval 3.6–13.0 percent) taught all 16 topics identified by the authors as critical features of LGBT experiences that affect health (Obedin-Maliver et al., 2011). Another study estimates that medical school students receive approximately 18.3 minutes of education about transgender health and related care (Kronk et al., 2022). Studies show similar deficiencies in transgender health training among medical residency programs, with one study finding that 60 percent of residency programs surveyed lacked any clinical rotation in which residents directly worked with transgender patients (Kopel et al., 2023). Nursing

students lack access to such training as well: one study estimates that baccalaureate nursing programs dedicate only 2.12 hours of curriculum time to LGBT-related content, and there is no estimation of how much of this content is related specifically to transgender health care (Lim et al., 2015).

Multiple studies examining self-perceived knowledge among health care professionals have demonstrated inadequate knowledge of health issues impacting TGD people (Dubin et al., 2018; Lelutiu-Weinberger et al., 2016; McPhail et al., 2016; Morris et al., 2019; Pratt-Chapman et al., 2022). Without training, providers feel uncertain and ambivalent during clinical encounters with transgender patients; feel less familiar with transgender patient health needs as compared with those of lesbian, gay, and bisexual patients; and have low confidence in their ability to discuss patient gender identity properly (Goldhammer et al., 2018; Morris et al., 2019; Poteat et al., 2013).

Insufficient training also reduces health care providers’ literacy in these topics. Providers report that they lack the appropriate language for engaging in SOGI discussions with their patients (Goldhammer et al., 2018; Mullins et al., 2020; Thompson et al., 2021). Providers may also lack a firm understanding of foundational concepts: one study found that 20 percent of nursing students believe sex and gender are synonymous (Sherman et al., 2021; Strong and Folse, 2015).

TGD patients have voiced concern regarding their clinicians’ level of knowledge about transgender care. In a study of 27,715 TGD respondents, for example, 5,612 individuals (23.8 percent) reported the need to teach their clinician about transgender people (Miller et al., 2023). TGD respondents who had to educate their provider about their health care needs had higher odds of reporting fair or poor health (versus good or excellent health) and higher odds of severe psychological distress compared with individuals who did not have to do so (Miller et al., 2023). Similar concerns exist regarding the transition of people with VSTs to adult care providers, who may have limited experience with the diversity and special needs of people with VSTs (Nowotny and Reisch, 2023).

The lack of training and support in these areas leads to significant missed opportunities for collecting SOGI data within clinical encounters. But despite these barriers, several studies describe promising models for educating health care providers about transgender health, including those focused at the undergraduate and graduate medical education levels and continuing medical education (Dubin et al., 2018; Ruprecht et al., 2023). Health care institutions must also be responsible for providing SOGI training: to be effective, these trainings need to encompass the full scope of individuals engaged in health care delivery—including administrative staff and others engaged in the process of collecting and updating accurate and affirming SOGI data (Dimant et al., 2019; Dubin et al., 2018; Lelutiu-Weinberger et al., 2016; Pratt-Chapman et al., 2022; Reisner et al., 2016).

Geographic Variability and Variability among Provider Types

As might be expected, SOGI data collection varies with geography. One study of FQHCs found that those located in municipalities that implement sexual and gender minority nondiscrimination laws collect more complete SOGI data for patients relative to those located in municipalities that lack these provisions (Almazan et al., 2021). Another study of community oncology practices found that providers were more likely to ask patients about their SOGI if their clinic was located in a western region of the United States or in a region with higher proportions of sexual and gender minority–identifying individuals (Cathcart-Rake et al., 2019).

Variation is seen among professional disciplines as well. While SOGI records are incomplete in many clinical settings, patient records in home health care settings are particularly so, with one study reporting that only 0.17 percent of records (35 of 20,447 records) contained documentation of the patient’s sexual orientation or gender identity (Bjarnadottir et al., 2019). Among comprehensive cancer centers, only 14 percent regularly collected sexual orientation data, and only 19 percent regularly collected gender identity data (Wheldon et al., 2018). In general, gender identity data may not be well documented outside of clinics that specialize in gender-affirming care (Sequeira et al., 2020), and these differences point to specific training needs for different provider types and for outreach to providers who work in regions where SOGI data collection is low.

Institutional Barriers

Even assuming providers have the training and competency to obtain SOGI data from their patients appropriately, obstacles within health care institutions may impede data collection. For example, health care settings may lack an established clinical workflow (e.g., who asks for SOGI data and when), standardized intake forms, or supportive institutional policies and guidelines, all of which hinder the collection of SOGI data (Dunne et al., 2017; Goldberg et al., 2018; Wheldon et al., 2018).

The design of the EHR system itself may inhibit SOGI data collection. For example, while the VHA has collected self-identified gender identity data through administrative systems since 2018, the system was not initially set up to link these data to patient EHRs, meaning that VHA providers could not see these important demographic data during clinic visits (GAO, 2020). Even though VHA providers can now find gender identity information in the EHR’s “patient inquiry box,” for privacy reasons, this information is not on the “banner” at the top of the patient’s record, which may make it difficult for VHA providers to find (Matza and McConnell, 2023). The VHA example shows that even where health care systems

and institutions want to collect SOGI data, it can take time to design an appropriate EHR format and to iron out compatibility issues and workflow processes between systems.

Another design challenge surfaces when the EHR platform does not contain a sufficient range of appropriate choices—for example, when the EHR lacks gender options for nonbinary patients or a free-text box in which patients can describe their identity if it differs from available response options—patients may be unable to disclose their SOGI information accurately and may not respond to these questions (Dunne et al., 2017). In addition, institutions may deploy EHR platforms that use outdated or potentially offensive terms or define key terms inconsistently, all of which hinders data collection (Baker et al., 2023b).

Privacy Concerns

The collection and maintenance of SOGI data poses the risk that gender identity status, presence of a VST, or other intimate personal information about an individual will be shared without their informed consent. Unwanted disclosure of SOGI data can pose both immediate harms (e.g., disclosure of SOGI data to a hostile family member who could pose immediate safety risks) and ongoing harms, such as differential treatment by health care providers or office staff (Alpert et al., 2023; Wall et al., 2023; Wood et al., 2022). Caution with disclosing SOGI information is justified considering the stigma often faced by TGD people and people with VSTs in health and social services contexts where SOGI data are collected. However, the committee did not uncover research examining the extent to which privacy concerns reduce the likelihood of TGD adults or adults with VSTs disclosing SOGI data within medical records.

The acute privacy concerns for TGD adolescents make SOGI data collection particularly challenging in pediatric settings. Adolescents face a risk of unwanted disclosure of SOGI to parents/guardians, who have access to their medical records. Given this, pediatric providers may have corresponding worries that they cannot sufficiently protect a pediatric patient’s privacy (Carlson et al., 2021; Goldhammer et al., 2022). In addition, the 21st Century Cures Act prevents health care providers from blocking guardians’ access to medical records and any sensitive information therein (Carlson et al., 2021). This dynamic may explain why few adolescents and adolescent medicine providers report asking their adolescent patients their SOGI data. A 2020 survey of transgender youth (aged 12–26 years, N = 204) found that only 9 percent were always or often asked about their preferred pronouns outside of specialty gender centers (Sequeira et al., 2020). In a recent survey of pediatric residents, only 20 percent reported asking their patients “often” about gender pronouns (Jelinek et al., 2020). More sophisticated EHR systems are in development that may allow adolescent patients to set controls and permissions

with respect to the visibility of their data or may allow clinicians to view data different from what is accessible to guardians via a patient portal (Vance and Mesheriakova, 2017). Until such systems become accessible, SOGI data collection in adolescent populations will remain a challenge.

ICD-10 CODES AND OTHER DATA

Where SOGI data are not well documented—either because of the failure of providers or institutions to collect such data or because EHR platforms are not designed with an appropriate two-step question—researchers and institutions can use codes in the International Classification of Diseases and Related Health Problems (ICD) to identify TGD patients and patients with VSTs.

The ICD is a health care classification system developed by the World Health Organization (WHO) that provides a system of diagnostic codes for categorizing diseases, diagnoses, and procedures. Because ICD codes provide a uniform way of collecting and maintaining patient data, they are imbedded in EHRs and used by health care systems to document patient care and seek insurance reimbursement.

Several codes in the 10th edition of the ICD (ICD-10) relate to care for TGD people (Box 3-2) and people with VSTs (Box 3-3). The committee notes that the ICD-10 codes originally became available in 1999 and contain several out-of-date and pejorative terms (CDC, 2023).

Using ICD Codes to Identify TGD Patients and Patients with VSTs

Because ICD codes may be present where other gender-identifying information is not, these codes have proved useful to researchers in identifying medical records of TGD patients. For example, research conducted at an urban quaternary care hospital specializing in gender-affirming care found that ICD-10 codes were more reliable than patient demographic data for identifying TGD patient medical records—identifying 63.05 percent versus only 14.49 percent of TGD patients, respectively (a combination of ICD-10 codes and demographic data identified the remaining 22.36) (Dubin et al., 2022). Other studies have found similar rates of TGD patient identification using ICD codes (Jasuja et al., 2020).

In the case of people with VSTs, ICD codes may be particularly important, as SOGI demographic categories in medical records typically do not include questions or response options that would document this identity. ICD codes corresponding to different VST diagnoses (see Box 3-3) may therefore be the only indication in medical records of patients with VSTs. These codes are helpful for tracking patients, especially as many

VSTs are rare. For example, researchers recently developed an algorithm of diagnostic codes and other data for identifying patients with Turner syndrome, a rare condition affecting about 1 in 2,000 live female births (Huang et al., 2023).

The committee notes that ICD codes do not represent every known VST or every population with VSTs. There are more than 30 medical terms for specific combinations of VSTs, and all people with VSTs are unique.

ICD-10 “Z Codes” Documenting Social Determinants of Health in the Medical Record

Beyond documenting specific clinical diagnoses, ICD-10 codes can document various factors that influence health. An extensive body of scientific evidence demonstrates that sociocontextual factors—outside of individual patient interactions with clinicians and health care systems—have a significant influence on individual- and population-level health (Chaiyachati et al., 2016; Chen et al., 2020; Hatef et al., 2019). Known as the social determinants of health (SDOH), these sociocontextual factors can be categorized into multiple domains, including (1) economic stability, (2) education access and quality, (3) neighborhood and built environmental factors, (4) social and community contextual factors, and (5) health care access and quality (OASH, n.d.). SDOH are key factors influencing long-term functional status and quality of life; they are modifiable and so have been identified as points of intervention for health systems and policies designed to improve health equity (Adler et al., 2016; Brown et al., 2019; Stonington et al., 2018; Warnecke et al., 2008; Weir et al., 2020). ICD-10 “Z codes” ranging from Z55 to Z65 capture these factors (CMS, 2021, 2023; Maksut et al., 2021) (see Box 3-4).

CMS, the National Academies, and other groups have encouraged use of these Z codes to advance health equity and reduce health disparities, and EHR vendors and health systems have increasingly added fields designed to promote the capture of SDOH data in structured formats (CMS, 2023; Wang et al., 2021). Some health systems have leveraged these codes to identify social needs and provide context-specific resources to enhance care for people with substantial health-related needs (Bensken et al., 2022; Wang et al., 2021).

Z codes enable health care providers to identify and appropriately document social factors impacting a patient’s health, and they can enhance the capture of unequal care and SDOH impacting TGD individuals. Importantly for SSA, Z codes may help identify factors outside of specific health care interactions that delay care or contribute to poorer outcomes among TGD people with SSA-designated disabilities. These considerations are especially important in light of the well-established disproportionate

burden of health-harming SDOH among TGD people across the life course, resulting from limited or no protection from discrimination, marginalization, and other key stressors, as well as inequitable access to a range of health-promoting conditions (Blosnich et al., 2017; Braveman and Gottlieb, 2014; Glick et al., 2020; Marcus et al., 2024; NASEM, 2019, 2020; Scheim et al., 2022). Examples include high rates of unemployment, violence, and homelessness that disproportionately impact TGD people (Glick et al., 2020; Henderson et al., 2022; Kuhns et al., 2021; Scheer and Poteat, 2021). For example, in a study examining the prevalence of health-harming SDOH among transgender U.S. veterans using data collected from 1997 to 2014 at the VHA, violence, housing instability, and housing strain were highly prevalent among TGD people and significantly associated with multiple medical conditions, including hepatitis C, mood disorders, and posttraumatic stress disorder (Blosnich et al., 2017).

Using Z codes, providers can capture these aspects of their patients’ lives, and Z codes in the medical record may indicate the broader context impacting health and health behaviors among TGD people and people with VSTs applying for disability benefits from SSA. For example, nonadherence to medication can be considered in the context of an individual’s financial means, transportation availability, and ability to access basic services within their physical environment (e.g., available mental health infrastructure, access to specialty providers). It should be noted, however, that despite their promise, Z codes are not widely used by providers. One review of Z code utilization among Medicare beneficiaries estimates that less than 2 percent of patients have Z codes documented in their medical record (Maksut et al., 2021).

Pharmacy Data and Natural Language Processing

In addition to identifying TGD patients through the use of ICD codes, researchers and health care entities use search algorithms that include pharmacy data to track the provision of gender-affirming hormones or natural language processing to track key words (such as “transgender” or “gender dysphoria”) within free-text clinical notes as alternative means of ascertaining TGD patients where SOGI data are incomplete (Ehrenfeld et al., 2019; Hines et al., 2023; Hua et al., 2023; Huang et al., 2023; Quinn et al., 2017; Streed et al., 2023; Xie et al., 2021). ICD-10 codes, SOGI data fields, pharmacy data, and clinical notes all have strengths and weaknesses for identifying TGD patients, but used in combination, they can provide more complete documentation (Jasuja et al., 2020). One study of patients at an academic medical center combined data from EHR SOGI fields, ICD-10 codes related to gender dysphoria, and pharmacy data on prescriptions for estradiol and testosterone; using this approach, researchers identified more than 99 percent of the total TGD population (Hines et al., 2023).

Using natural language processing algorithms may also be useful for correcting information where SOGI data collection is inaccurate. One study comparing the accuracy of SOGI data fields versus a keyword search or ICD code found that a small number of cisgender patients had been identified as possibly transgender by their gender identity selections within SOGI data fields. For these patients, keywords within free-text clinical notes helped clarify patient identity where SOGI data collection produced inaccuracies (Foer et al., 2020).

Documenting TGD patients via ICD codes can help health systems understand disparities experienced by the patients they serve. For example, a recent study used ICD-10 codes and prescription data to find a cohort of Medicaid-enrolled TGD people living with HIV, finding that they had lower viral suppression rates (76 percent) than cisgender women (80.4 percent) and cisgender men (83.3 percent); however, that study found higher viral

suppression rates among TGD people who had gender-affirming surgery than among the cisgender population (Rodriguez-Hart et al., 2023). An examination of medical records at one university health system (which included diagnostic codes, recorded sex, and clinical narrative text that indicated gender identity and sex) found a chronic kidney disease prevalence of 36 percent among transgender patients, substantially higher than would be expected relative to cisgender data (Eckenrode et al., 2022). By examining ICD-10 codes and specific key words in free-text clinical notes within three Kaiser Permanente health plan regions, researchers uncovered a higher frequency of certain adverse events for TGD people, leading to a follow-up study on diabetes incidence among TGD patients (Islam et al., 2022; Quinn et al., 2017). The VHA has also used ICD codes to identify TGD veterans within its system, revealing numerous health disparities for them compared with cisgender veterans, including higher rates of suicidality, housing instability, and substance use (Blosnich et al., 2013, 2018; Fletcher et al., 2022).

Limitations of ICD Data

While these examples show the potential value of ICD codes and similar data for health systems’ documentation of health disparities among TGD patients, researchers caution that these data may not be reliable in all circumstances. For one thing, not every TGD person will seek gender-affirming services that generate an ICD code or utilize gender-affirming hormone therapies that generate pharmacy data (Hines et al., 2023). Chapters 5–7 of this report describe the multiple and varied gender-affirming services available for TGD people and people with VSTs, many of which do not correspond to an ICD code. In addition, ICD-10 codes related to care for TGD people may be used less frequently outside of specialty gender care clinics (Dubin et al., 2022). Use of these codes may also fail to count individuals who are unable to access gender-affirming interventions, which may result in disproportionately undercounting those of lower socioeconomic status who are not connected to health plans that cover gender-affirming services or cannot pay for these services out of pocket (Kronk et al., 2022). ICD-10 codes have also been seen as pathologizing, as codes related to care for TGD people fall underneath a mental health diagnostic code (Wesp et al., 2019). Some providers may refrain from using these codes for this reason.

In addition, the consistent and accurate reporting of SDOH Z codes has been inadequate to date, in part because of providers’ lack of knowledge of SDOH and limited time to spend with patients uncovering underlying needs. Current Z coding in TGD/VST patient charts also is likely to be poorly reflective of the actual burden of social needs (Chang et al., 2024; Jacobs, 2021; Kostelanetz et al., 2022; Truong et al., 2020; Yang et al., 2022).

While identifying TGD people or people with VSTs through ICD codes, pharmacy data, or other such information has benefits for research, the committee notes that individual patients may object to their medical records being examined in this way. While the research presented above examines this type of data in the aggregate to better understand health disparities in a way that may improve services, there is a risk that organizations could use these data to identify individual TGD patients or patients with VSTs who would not have chosen to report such identities or experiences. For these reasons, rather than relying on ICD-10 codes, health care settings can seek to improve SOGI data collection to capture all patients with TGD or VST identity or lived experience (Dubin et al., 2022), while offering patients the autonomy to select for themselves how they want to be identified in medical records.

FUTURE OF SOGI DATA COLLECTION WITHIN ELECTRONIC HEALTH RECORDS

Where SOGI data collection is in place, there remains significant variability in how these data are collected and how they are used in clinical practice. Despite a deep body of research on the benefits of SOGI data and best practices for collecting these data appropriately, the health care system has been slow to adopt these practices. Efforts are under way that may address some of these challenges. This section explores the recent update of the ICD classification system that may better capture TGD people and

people with VSTs in the medical record, as well as other data collection tools—such as the “anatomical inventory” and “sex for clinical use” data field—that are aimed at advancing and expanding SOGI data collection in ways that support patient-centered clinical decision making.

ICD-11

WHO (n.d.-b) recently updated the ICD classification system to incorporate advances in science, medicine, disease treatment, and prevention, with the goal of enabling more precise and more detailed data recording and collection. Effective January 1, 2022, the International Classification of Diseases and Related Health Problems, 11th edition (ICD-11), reconceptualizes and reorganizes diagnostic codes related to TGD health to “reflect modern understanding of sexual health and gender identity” (WHO, n.d.-a). Box 3-5 lists the revised ICD-11 codes under the new term “gender incongruence,” along with the language used by the ICD to describe each category.

ICD-11 replaces outdated terms such as “transsexualism” with “gender incongruence” and removes the pathologizing label of “disorder.” The new edition locates “gender incongruence” categories, organizationally, within a new chapter titled “Conditions Related to Sexual Health.” In previous versions of the ICD, the “gender identity disorder” category was placed in the chapter on “Mental, Behavioral or Neurodevelopmental Disorders” (see Box 3-2). By reconceptualizing gender incongruence under sexual health, the ICD recognizes that it is inappropriate to classify TGD identity as a mental health disorder, as the mental health component leading to distress or functional limitation for some TGD people is not linked to gender identity itself but to the experience of violence and discrimination (Baleige et al., 2022; Robles et al., 2022). This reclassification may help reduce the social stigma associated with TGD identity and the perception that some TGD people have disorders or sicknesses that should be cured.

However, this new classification is not without limitations: organizing categories of gender identity under sexual health can incorrectly leave the impression that these are sexual health problems (Giordano, 2023). This concern aside, the move away from mental health classification may have practical implications for care, as it may mean more coverage of gender-affirming care by insurance companies, and thus more accurate coding by providers who see TGD people. In general, it is often more difficult for patients to receive coverage for mental health–related claims, such as those under the ICD-10 (F64 and Q56.3) gender identity disorder classification (CSE, 2019), than for medical claims. In these cases, providers may get creative with the codes they use to record patient care, meaning that ICD-10 codes may not accurately record TGD treatment and care. With gender incongruence now classified within a sexual health framework,

ICD-11 may enable providers to code accurately, which could serve to increase the presence of such ICD codes within medical records; however, this approach may have drawbacks, where coding under a sexual health framework may not capture all patient circumstances.

ICD-11 also reorganizes and updates WHO’s classification related to VSTs. Box 3-6 lists the revised ICD-11 codes, which fall into two main groupings: (1) “Adrenogenital disorders” in Chapter 17: Conditions Related

to Sexual Health, and (2) “Malformative disorders of sex development” in Chapter 20: Developmental Abnormalities. While ICD-11 removes outdated terms such as “hermaphroditism” and “pseudohermaphroditism” and expands the categories of VSTs, ICD-11 has been criticized for using the language “disorders of sex development,” which may inaccurately pathologize VSTs as “disorders” (Carpenter, 2018). Previous studies have demonstrated that this nomenclature is offensive and distressing to patients and may cause individuals to avoid seeking health care (Johnson et al., 2017). In addition, placing certain VST categories in the sexual health chapter does not have the same effect of reducing social stigma as the gender incongruence codes, as these variations were not previously classified under mental health categories in ICD-10 (rather, they were included in a chapter on endocrine diseases).

Finally, ICD-11 reorganizes Z codes related to SDOH under a new heading, “Factors Influencing Health Status.” ICD-11 includes additional codes related to SDOH (e.g., including “insufficient insurance coverage,” coded as QE30), but it omits others that are present in ICD-10 (e.g., “personal history of abuse in childhood”) (Handerer et al., 2021).

ICD-11 is in the process of being adopted by WHO member countries, but it may take several years for its successful rollout in the United States, given the challenge of cross-walking the more than 70,000 current ICD-10 codes to corresponding ICD-11 codes and updating every ICD-dependent process, including billing and reimbursement systems, quality measurement, and data reporting systems within the U.S. health care system (Feinstein et al., 2023). Still, to the extent that the reclassification of TGD health-related diagnoses encourages providers to use these diagnostic codes to

document care and treatment, ICD-11 could become a more dependable way to document TGD patient care within medical records. And to the extent that expanded ICD-11 codes for VSTs bring more accurate recording of patient treatment and experience, these codes, too, may be useful for health systems and researchers seeking to better understand the many experiences of people with VSTs.

However, ICD-11 codes alone are unlikely to be a way to identify all TGD patients and patients with VSTs, as some populations will remain undercounted. Similar to the problems with ICD-10, not every health experience can be coded under this new framework, and the ICD-11 reorganization does nothing to improve access to gender-affirming care and treatment for populations that are currently unable to access them.

Anatomical Inventory

While EHR data collection that asks for a person’s gender identity and sex recorded at birth may enable clinicians to address patients in a respectful manner and offer culturally responsive and individually tailored care, such data collection does not tell clinicians about their patients’ anatomy. TGD patients and patients with VSTs may have features of their anatomy that do not match traditional expectations based on gender identity or sex recorded at birth. While some TGD people undergo medical and surgical interventions to affirm their gender identity—including genital surgery, hysterectomy, or breast augmentation—others do not. Even if clinicians are aware that their patients are TGD, they cannot know the organs their patients have without asking.

Likewise, people with VSTs may have organs that do not match their gender identity or sex recorded at birth. For example, individuals born with androgen insensitivity syndrome (AIS) present physically as female, are usually recorded female at birth, and typically identify with a female gender identify (Hines et al., 2003). However, because they are born with XY chromosomes, they have internal, undescended testes and do not have a uterus. Some people with AIS will have their testes surgically removed; others will not. If clinicians make assumptions about organs based on gender identity and sex recorded at birth, they may miss an important opportunity to discuss cancer risk with patients with AIS.

There have been recent efforts to encourage clinicians to ensure that an anatomical inventory of their patients has been completed, either by the patient or as part of the standard practice of taking a medical history (Grasso et al., 2021). This may also be referred to as an “organ inventory.” The goal of an anatomical inventory is to document and track the presence or absence of sexual/reproductive organs within the patient’s EHR along with any surgeries related to those organs. Such inventories have obvious advantages for TGD patients and patients with VSTs, but they are

important for all patients. A clinician may be unaware, for example, that a cisgender female patient has had a hysterectomy (removal of the uterus) as treatment for endometriosis, or that a cisgender male patient has had an orchiectomy (removal of the testicles) as part of treatment for prostate cancer. With an accurate understanding of patient anatomy together with data on gender identity and sex recorded at birth, clinicians can offer appropriate preventive health screenings, chronic disease management, and long-term care that are tailored to the needs of every patient.

Today, some EHR vendors include a standardized anatomical inventory template within their platform; other EHR vendors permit health care organizations to customize their own anatomical inventory template (Grasso et al., 2021). Yet while EHR capabilities may be present, anatomical inventories are not yet used in common practice.

There have been some efforts to bring the anatomical inventory into wider use. In 2022, for example, the Oregon Health Authority issued draft SOGI data collection recommendations that, in addition to questions on gender identity and sex recorded at birth, include an anatomic inventory (OEI, 2023). As part of “best practice recommendations to assure quality medical care,” the draft recommendations call on health care providers to ask patients about their anatomy using the question presented in Box 3-7 (OEI, 2023, Appendix A).

As anatomical inventories become more commonplace, thought leaders suggest that anatomical inventory data should correspond to ICD codes to enhance the accuracy and tracking of quality-of-care measures (Grasso et al., 2021).

Sex for Clinical Use

The Health Level Seven International Gender Harmony Model is a conceptual model produced through a collaborative, international effort that aims to improve the standardization of SOGI data collection by specifying gender-inclusive standards that can be used by health care providers and health systems (McClure et al., 2022). EHR developers can look to the Gender Harmony Model for updated terminology that is both clinically useful and culturally appropriate (Baker et al., 2023a).

The intent of the model is to push the system to advance the collection of information that will aid in the provision of affirmative and quality person-centered care. Many aspects of the Gender Harmony Model match best practices in SOGI data collection described throughout this chapter. One additional element of this model is the concept of “sex for clinical use,” or the idea that “a given patient can have one sex for routine clinical care, but another sex for reproductive care or cancer screenings or for certain clinical assessments where sex-based assessments may be necessary (e.g., kidney function tests and lung function tests)” (McClure et al., 2022).

The concept of sex for clinical use is not used regularly within the U.S. health care system, and providers do not commonly collect the data elements required—such as an anatomical inventory, measurement of hormone levels, or chromosomal analysis—for this type of clinical patient care to become a reality. However, the Gender Harmony Model demonstrates the possibility of data that could be collected and serves as an aspiration for providers and institutions to move toward collecting these data elements.

SUMMARY OF KEY POINTS

SOGI data collection is enormously beneficial to patients because it promotes patient trust and comfort with providers, reduces health care avoidance among TGD people and people with VSTs, and enhances the patient experience by helping providers make informed and patient-centered clinical decisions about treatment and care. However, this chapter has documented the varied and complex challenges involved in bringing widespread and meaningful SOGI data collection to the U.S. health care system. While efforts are under way to advance and expand SOGI data collection, these model efforts are not part of current practice, and many providers and institutions across the health care system may not record or collect adequate

or accurate SOGI data for the patients they serve. While people can change their gender identity on their Social Security records, SSA does not ask about sex recorded at birth or gender identity or other SOGI data on applications for disability benefits.

As medical records alone may fail to identify the gender diversity of TGD applicants or appropriately capture biological characteristics relevant to applicants with VSTs, giving applicants the option to enter their own sex and gender identity information when submitting a disability application to SSA would enable a more accurate understanding of applicant characteristics and, ultimately, more accurate assessment of disability. Asking SOGI questions of applicants up front allows applicants to choose how to report their identity to SSA (rather than having adjudicators piece together their identity through other information in the medical record). However, it is important that applicants always have the option to keep SOGI data private from SSA.

REFERENCES

4

Data on Sex and Gender Identity: Collection Across the U.S. Health Care System

Individuals applying for disability benefits from the Social Security Administration (SSA) access health insurance in different ways and access care from different types of providers. Therefore, it is important to understand how the collection of data on sexual orientation and gender identity (SOGI) that takes place—or does not—within various sectors of the health care system impacts the quality of SOGI data that will be present in medical records received by SSA. SSA can also learn from those parts of the health care system that are beginning to embrace the importance of SOGI data by moving toward policies that encourage payers and providers to document these data, and in some cases, use this information for clinical decision making. The health care system is evolving with respect to SOGI data collection, and it may be useful for SSA to understand current practices and upcoming changes so it can evaluate whether and how it may need to update its own internal data collection policies to fill the gaps when SOGI data collection in other sectors falls short.

Chapter 3 of this report examines the substantial benefits of SOGI data collection, along with the significant biases and structural barriers that prevent robust SOGI data collection in health care settings. A key barrier discussed in Chapter 3 is the fact the United States does not have federal standards or mandates for the collection and reporting of SOGI data. While certain components of the health care system collect SOGI data for the populations they serve, few federal-level policies are in place that require health care providers or health insurers to record information about patient gender identity or sex recorded at birth, both considered

key data points for documenting the health care experience of transgender and gender diverse (TGD) people and people with variations in sex traits (VSTs). Currently, application forms for SSA disability programs do not ask applicants about gender identity, sex recorded at birth, or other SOGI data.¹

This chapter provides an overview of SOGI data collection policies across the health care system, starting with a discussion of recent efforts to increase the collection of these data among public and private health insurers, including Medicaid, Medicare, TRICARE, and private health plans. Next, the chapter examines what SOGI data collection looks like within various federal-level health care delivery systems—including federally qualified health centers (FQHCs), the Veterans Health Administration (VHA), and the Indian Health Service (IHS)—and reviews state-level efforts to encourage and incentivize providers to collect these data. Finally, the chapter describes SOGI data collection within federal surveys and other population-level data collection tools.

SOGI DATA COLLECTION AND HEALTH INSURERS: MEDICAID, MEDICARE, TRICARE, AND PRIVATE HEALTH INSURERS

Increasingly, health insurers are collecting SOGI data from individuals who apply for or enroll in various health insurance programs. In 2022, the Biden administration issued Executive Order 14075, Advancing Equality for Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex Individuals.² Among other priorities, it calls on federal agencies to “advance the responsible and effective collection and use of data on sexual orientation, gender identity, and sex characteristics.”³ Stemming from this directive, in 2023 the U.S. Department of Health and Human Services (HHS, 2023) developed the SOGI Data Action Plan, a roadmap for federal agencies’ development of agency-specific SOGI data collection policies. Among other activities, the plan calls on HHS programs and divisions to add SOGI data elements to existing surveys and forms and, where possible, to remove binary gender and sex data measures and replace them with tested and inclusive gender identity data measures. The plan does not put forward specific SOGI questions and response options, but promotes the two-step question

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¹ SSA disability application forms contain a free-text “remarks” space for applicants to include additional details about any aspect of their disability application. Applicants could use the remarks section of the application form to provide details about gender identity or sex recorded at birth, but the committee does not know how frequently applicants enter such information.

² Executive Office of the President. 2022. Exec. Order No. 14,075, 87 Federal Register 37189-37195 (June 15, 2022).

³ Executive Office of the President. 2022. Exec. Order No. 14,075, 87 Federal Register 37194 (June 15, 2022).

methodology (i.e., inclusion of separate questions on gender identity and sex recorded at birth, as described in Chapter 3) and stresses the importance of including items on “sex characteristics.”

The Centers for Medicare & Medicaid Services (CMS) has responded to HHS’s SOGI Data Action Plan by implementing changes to enrollment forms to allow CMS to collect these data at the point of enrollment in Medicaid and the Children’s Health Insurance Program (CHIP); CMS is in the process of examining how to incorporate SOGI data collection into Medicare. This section explores these changes, as well as programs at the federal and state levels designed to incentivize providers who seek Medicaid and Medicare reimbursement to record SOGI data during patient encounters. This section also explores similar efforts under way among private health insurers.

Medicaid

Medicaid is an important source of health insurance coverage for many individuals who apply for and receive disability benefits from SSA. Some applicants for disability benefits may already be covered by Medicaid at the time they apply, while others may gain Medicaid coverage after they qualify for disability benefits, either because they fall into a categorical Medicaid category, as is the case for many Supplemental Security Income (SSI) recipients, or because they meet Medicaid income eligibility criteria as they await Medicare enrollment, as is the case for many Social Security Disability Insurance (SSDI) recipients. (For background information on Medicare and Medicaid coverage for SSI and SSDI recipients, refer to the discussion in Box 4-1.)

Medicaid may be especially important for sexual and gender minorities with disabilities. A 2022 KFF survey of people aged 18–64 examined access to insurance coverage, finding that a greater portion of LGBT+ people receive Medicaid compared with their non-LGBT+ counterparts (21 vs. 16 percent) (Dawson et al., 2023). The survey also found that a higher portion of LGBT+ respondents had a “disability or chronic disease preventing full participation in work, school, housework or other activities” compared with non-LGBT+ respondents (25 vs. 16 percent).⁴ Among LGBT+ people, those with Medicaid had much higher rates of disability compared with LGBT+ people with private insurance coverage (45 vs. 15 percent). These significant health concerns do not occur in a vacuum: as described in Chapters 5 and 7, TGD people and people with VSTs experience multilevel stigma and structural factors that may put them at greater risk for disease, with reduced ability to seek the services they need for optimal care and management.

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⁴ The KFF survey’s definition of disability was “chronic disease preventing full participation in work, school, housework, or other activities.”

How the Medicaid program collects and records SOGI data impacts the quality of the information on which SSA can rely for making appropriate disability determinations for Medicaid-enrolled applicants for whom questions on gender identity and sex recorded at birth are important. This section describes the current state of SOGI data collection among providers that serve people with Medicaid coverage and the delivery systems and organizations that manage their care. The section begins with an analysis of the state- and federal-level Medicaid policies for collecting SOGI data, including a description of the changes to policy at CMS that promote SOGI data collection within the Medicaid system.

Medicaid and SOGI Data Collection: CMS’s Model Application

On November 1, 2023, CMS (2023a) issued an informational bulletin putting forward a new model application for enrollment in Medicaid and CHIP. This model application includes, for the first time, optional questions about gender identity, sex recorded at birth and sexual orientation. Accurate and quality SOGI data are critical to advancing health equity within the Medicaid program, and this new data collection policy has the potential to provide CMS and state Medicaid programs with a more accurate depiction of the needs, health outcomes, and disparities experienced by their enrollees based on sex, gender identity, and other related characteristics. CMS recommends that the new SOGI questions be asked of all Medicaid and CHIP applicants aged 12 and older.

CMS’s model application uses the two-step question methodology, asking about sex recorded at birth (using the phrase “sex assigned at birth”) and gender identity separately. This approach, detailed in Table 4-1, generally follows best practices in the field that call on health insurers and providers to collect SOGI data using this methodology (Chapter 3 of this report discusses the two-step question, along with other best practices for SOGI data collection). The model application does not include a separate question about VSTs, but free-text responses may prompt applicants to disclose this information. In communications about its model approach, CMS (2023b) states the importance of including free-text responses so consumers can enter their own preferred terms or describe characteristics about their identity that are not otherwise captured in response options.

Prior to the introduction of these new SOGI data fields, CMS’s model application required applicants to respond to a single binary “sex” question with “male” and “female” responses. The updated model application retains the binary sex question, and this question remains the only required question. The new sex recorded at birth and gender identity questions are optional, and Medicaid/CHIP applicants may skip these questions during enrollment with no impact on eligibility determination.

TABLE 4-1 Questions on Sex Recorded at Birth and Gender Identity in Federal Health Insurance Programs

NOTES: While many of the federal programs listed above ask questions about sexual orientation, these questions and responses are not listed here. The table presents SOGI data questions in the order they are asked (or proposed to be asked) by CMS—i.e., that a question related to sex recorded at birth is asked first, followed by a question about gender identity. As described in Chapter 3, it is considered best practice to order the questions in the reverse order: ask first about gender identity then about sex recorded at birth (Deutsch et al., 2013).

CMS’s model application—and the updated SOGI questions therein—represent an enormous improvement in SOGI data collection within the Medicaid and CHIP programs. CMS (2023a) encourages all states to adopt the model application, but CMS policy does not require them to do so. States may elect to add some SOGI questions but not others, or to use different language/wording or response options. States may also continue to use current applications without change. The only requirement set by CMS is that SOGI data collection must be optional; states may not require Medicaid/CHIP applicants to answer any SOGI questions other than the required binary sex question.

Where states use the model application, it will help create uniformity and ensure that data collection serves to improve consumer experience by allowing people to attest to their gender identity and sex in a way that reflects their lived experience. CMS (2023a) states that it will use the new SOGI questions to “improve demographic data collection to identify disparities in access to care and, ultimately, to support appropriate and equitable health care” (p. 1). CMS is targeting 2025 to begin receiving SOGI data submissions in the Transformed Medicaid Statistical Information System.

Current SOGI Data Collection within Medicaid

Given the recency of CMS’s guidance on SOGI data collection, no data are available on how many states will adopt the model SOGI data questions. However, a recent review of SOGI data collection across state Medicaid programs demonstrates the considerable variability in and lack of SOGI data collection overall that this new CMS model application is designed to address.

In August 2023, the State Health Access Data Assistance Center (SHADAC) reviewed paper Medicaid applications for all 50 states and the District of Columbia, along with 44 online Medicaid applications (Zylla and Lukanen, 2024). SHADAC’s survey found that the majority of state Medicaid program applications (41 paper and 42 online applications) provided only binary “male” and “female” response options to any questions asked about sex or gender. SHADAC found that while some paper applications allowed for a write-in option (where applicants could indicate something other than male or female under either sex or gender), only a handful of states provided more than “male” and “female” checkboxes as responses on their paper or online applications. In addition, the review found that questions about sex and gender could be confused or conflated on Medicaid applications or omitted altogether. Table 4-2 provides a few examples of SOGI questions uncovered by SHADAC’s state Medicaid review, showing the variability in questions and response options.

As shown in Table 4-2, prior to the new model application, Oregon was the only state to use a two-step methodology for asking applicants about sex recorded at birth (using the phrase “sex assigned at birth”) and gender

TABLE 4-2 Examples of SOGI Questions from Various State Medicaid Applications (as of August 2023)

SOURCE: Zylla and Lukanen, 2024.

identity, although Oregon’s approach does not currently offer options beyond male and female for the sex recorded at birth question. Washington State is reportedly in the process of exploring options for adding a gender identity question (Washington State Health Care Authority, 2024⁵); the state already asks a mandatory question about each applicant’s “sex assigned at birth” (responses: male or female) (Washington State Health Care Authority, 2022a).

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⁵ Washington State Health Care Authority has stated that it intends to align with other state programs and policies that ask a mandatory question about sex assigned at birth and an optional gender identity question. It reportedly uses the mandatory sex assigned at birth field to coordinate benefit coverage (e.g., uterine cancer screenings are covered only for those who were assigned female sex at birth, and prostate exams are covered only for those who were assigned male sex at birth) (Washington State Health Care Authority, 2024).

Medicare

As described in Box 4-1, Medicare is an important source of health insurance coverage for individuals who qualify for SSA disability benefits under the SSDI program. In contrast with Medicaid, individuals seeking benefits under the SSDI program are not likely to be covered through Medicare when they submit a disability application to SSA. However, SSDI recipients are likely to be covered by Medicare by the time of their first continuing disability review (CDR),⁶ and having accurate and up-to-date SOGI information during the CDR may be important. After all, SOGI data are not static. In the interim between the initial disability determination and first CDR (or between one CDR and another), SSDI beneficiaries may have undergone some amount of gender-affirming treatment or care, while others may have learned they have a VST, and still others may have had no specific change in their personal understanding of their own sex traits and gender identity but are now ready to disclose such information to health care providers or insurers. Therefore, whether and how the Medicare program and the providers who serve Medicare-enrolled populations collect and record SOGI data may impact the quality of information on which SSA can rely for making appropriate CDR determinations, especially those for which questions around gender identity and sex recorded at birth are important.

CMS currently does not collect any SOGI data to identify and track TGD Medicare beneficiaries or beneficiaries with VSTs. As noted above, however, CMS is in the process of examining how to incorporate SOGI data collection into Medicare. In 2022, CMS (2022b) issued a framework for health equity that included, among other priorities, collecting, reporting, and analyzing data on “gender identity, sex, [and] sexual orientation” (p. 10). Building on these efforts, CMS (2023e) is currently engaged in a rulemaking process to update enrollment forms for individuals enrolling in Medicare Advantage (MA or Part C) plans and Medicare Prescription Drug (Part D) plans. On September 29, 2023, CMS (2023c) released a proposed model enrollment form for MA and Part D plans that includes a sex assigned at birth question and a gender identity question, in addition to questions about sexual orientation, race, and ethnicity. CMS has proposed that these enrollment form changes would go into effect for calendar year 2025. However, the agency is in the process of collecting public comments from interested stakeholders and has not issued a final rule.

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⁶ Any person who receives disability benefits must have their medical conditions reviewed periodically through a process called continuing disability review (CDR). How often the CDR takes place depends on the nature of the disability and whether a condition is likely to improve. A review by SSA (n.d.) typically occurs every 3 years but could take place as soon as 6–18 months after the most recent disability determination (for conditions that are expected to improve), or as long as 7 years later (where medical improvement is not expected).

Table 4-1 displays CMS’s proposed sex recorded at birth and gender identity questions for MA and Part D plans. The proposed model form contains the minimum amount of information required to process Medicare enrollment in MA and Part D plans, but CMS gives plan administrators flexibility to modify the language and content of the enrollment form. This means that going forward, CMS is not proposing to require standardized SOGI data collection across Medicare plans; public commenters have noted this problem and have urged CMS to work with other HHS agencies to adopt standardized measures (National Health Law Program, 2023). Notably, the proposed Medicare questions/responses

are similar to, but not the same as, the newly adopted Medicaid/CHIP questions and responses, and both sets of SOGI data options are again different from the SOGI data collected by other components of the health care system (as discussed below and displayed in Tables 4-1 and 4-3).

Public commenters have also urged CMS to add SOGI demographic fields to the Medicare Part B application, and have requested that CMS’s data collection efforts include identifying populations with VSTs and other demographic characteristics, such as preferred language and disability status (National Health Law Program, 2023). CMS has not indicated whether or when it will move toward wider adoption of SOGI data collection across all Medicare programs or whether it will adopt a wider range of demographic questions. Still, the proposed MA and Part D enrollment questions are a major step forward toward meeting the goals of CMS’s health equity framework for many Medicare beneficiaries.⁷

TRICARE

TRICARE is the U.S. Department of Defense (DoD) health care insurance program for active-duty service members and their families (including National Guard and Reserve members and their family members, retirees and retiree family members, survivors, and certain former spouses). Service members who separate from service because of a service-connected injury or illness may become eligible for Social Security disability benefits (and therefore, Medicare or Medicaid coverage), but may also retain TRICARE benefits, depending on their circumstances (TRICARE, 2023).

Although LGBTQ+ individuals may now serve openly in the military, DoD (2021) policy and practice have prohibited the collection of SOGI data from military personnel, stating:

Given this policy, TRICARE has not moved to adopt SOGI data collection on its enrollment forms and has not set expectations for TRICARE plan administrators to collect these data.

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⁷ More than half of the Medicare-enrolled population is enrolled in an MA plan, and about three-quarters are enrolled in a Part D plan (CMS, 2021).

Private Health Insurers

Private health insurance is a significant source of coverage for TGD people—a 2022 KFF survey found that 59 percent of LGBT+ respondents aged 18–64 were covered by a private health insurance plan (Dawson et al., 2023). Whether any federal SOGI data requirements apply to individual private health plans depends on whether the plan is sold through state marketplaces or through the employer-sponsored market.

Qualified Health Plans Operating through State Marketplaces

Under the Affordable Care Act (ACA), consumers may purchase private health insurance policies, known as “qualified health plans,” that meet certain ACA-mandated standards (including a group of essential health benefits and limits on out-of-pocket expenses). States are required to have a single, streamlined application for people to apply for Medicaid/CHIP coverage or financial assistance (e.g., tax credits or cost-sharing reductions that reduce insurance costs) to purchase qualified health plans sold on state health insurance marketplaces (also known as exchanges).⁸ States can use the CMS-developed model application or an approved alternative to determine eligibility for these programs. CMS’s model application (and the SOGI questions therein, as described above) is effective immediately in the 32 state marketplaces that use the Federally Facilitated Marketplace (FFM) platform (CMS, 2023a).

Nineteen states (including the District of Columbia) operate their own state-based marketplace platforms⁹; the remaining states use the FFM either fully or just for select functions (application processing and certain eligibility and enrollment activities). States that operate their own health insurance marketplaces do so with the goal of saving money and gaining more control and authority over marketplace functions. Consumers in these states apply for and enroll in coverage through separate marketplace websites maintained by the states. As states operating their own marketplaces use state-specific enrollment forms that may differ from federal forms, they will not automatically incorporate CMS’s new SOGI questions (although CMS guidance encourages states to adopt the model application).

In states that utilize the FFM and enrollment forms on HealthCare.gov, consumers applying for qualified health plans will use CMS’s new model

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⁸ Patient Protection and Affordable Care Act, 42 U.S.C. §§ 18083, 1396w–3 (2010).

⁹ The following states operate their own state-based marketplaces, and therefore, will not automatically utilize the SOGI questions on CMS’s model application: California, Colorado, Connecticut, District of Columbia, Idaho, Kentucky, Maine, Maryland, Massachusetts, Minnesota, Nevada, New Jersey, New Mexico, New York, Pennsylvania, Rhode Island, Vermont, Virginia, and Washington (KFF, 2024b).

application forms (outlined above), including the SOGI data questions displayed in Table 4-1.¹⁰ Despite CMS’s new enrollment forms, however, FFM participation may not guarantee SOGI data collection. Through a process called “direct enrollment,” the federal government allows health plan issuers and third-party web brokers operating in states that use the FFM to enroll consumers directly from their own websites instead of requiring them to use HealthCare.gov (CMS, 2023d).¹¹ Whether a consumer enters the process through HealthCare.gov or via a direct enrollment website is often a matter of chance, and the direct enrollment pathway raises several concerns for consumers, as these websites have been found to offer health plans that do not comply with ACA standards and may not direct consumers toward Medicaid or other subsidies to which they are entitled (Straw, 2019). In the case of CMS’s model application form, it is unclear whether direct enrollment entities will adopt this new form or the SOGI data collection therein, meaning that SOGI data collection may vary depending on which website a consumer stumbles onto when enrolling in marketplace coverage.

Employer-Sponsored Health Plans

Employer-sponsored health plans are offered to employees and their dependents as a benefit of employment. These plans currently provide some level of health care coverage for approximately 153 million Americans (KFF, 2023b). While the ACA includes certain requirements for employer-sponsored health plans (including requirements on cost and benefits and a mandate for companies with 50 or more employees to offer health insurance coverage for employees), the law did not change the way health plans are sold, and employees who access these plans continue to enroll through their employers as they did prior to the ACA (in other words, they do not enroll through HealthCare.gov or a state-run marketplace). Therefore, CMS’s model application form is not applicable to health plans that are sold through the employer-sponsored market, nor are other recent HHS initiatives aimed at improving data collection.

Increasingly, health plans operating in the employer-sponsored market are taking note of the importance of SOGI data collection. The National

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¹⁰ While states may participate in the FFM, this does not mean that the SOGI data collected are automatically generated into state Medicaid applications as applications may be processed separately. As described above, states must elect to adopt CMS’s model application for use in their Medicaid program.

¹¹ In some cases, consumers applying through a direct enrollment entity are directed to HealthCare.gov to fill out an eligibility application and then redirected back to the direct enrollment entity to compare health plans and enroll in coverage. In other cases, the direct enrollment entity conducts the full application and enrollment process without directing consumers to HealthCare.gov at any point in the process.

Association of Insurance Commissioners (NAIC, 2021)¹² issued a set of principles for data collection in December 2021, calling on health insurers to systematically collect a series of voluntarily reported enrollee data, including data on sex recorded at birth, gender identity, and sexual orientation. NAIC advises health insurance companies to follow best practices in data collection and ensure that data collection is always voluntary for plan enrollees (e.g., by ensuring that there is always a “prefer not to answer” option for each question). NAIC also cautions that such demographic data should be used only to analyze health disparities and inequities and never for benefit determinations (as prohibited by law).

When NAIC drafted these principles, it received numerous comments from interested industry organizations. Judging from these comments, the employer-sponsored health insurance industry as a whole appears supportive of SOGI data collection at the point of health plan enrollment, but some organizations have expressed concerns. For example, America’s Health Insurance Plans (AHIP, 2021a), an advocacy organization for health insurance providers, agrees that it is important for health plans to collect SOGI data systematically but cautions that sometimes these questions may be “extremely uncomfortable” for consumers to answer (especially where the questions are not developed through a consumer-driven process) and should be collected only in a trusted patient–provider relationship. AHIP (2021b) states further that employers may be reluctant to update enrollment forms and ask employees to provide this information, and that the health insurance industry should work with other components of the health care system to develop stakeholder-driven demographic data standards. Other leaders have also stressed the need for industry-wide standards for SOGI data collection (BCBSA, 2022).

Even without health care system–wide standards in place, NAIC’s (2021) final principles for data collection cite the National Academies’ 2022 consensus study Measuring Sex, Gender Identity, and Sexual Orientation as a guide to SOGI data collection, stating:

It is unclear how many employer-sponsored health plans currently collect SOGI data and how many employers require employees to report

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¹² NAIC is a standards-setting organization governed by the chief insurance regulators from all 50 states, the District of Columbia, and five U.S. territories.

such data at the point of plan enrollment. This committee did not uncover any research studies examining this question. However, a few health plans have made statements about their approach to SOGI data collection:

• Blue Cross Blue Shield Association (BCBSA, 2022)—a national federation of 35 Blue Cross Blue Shield plans—published a report on the use of data to reduce health disparities, describing the changes that need to be made across the health care system to make robust collection of SOGI data a reality. BCBSA’s report is not a statement about what its plans are doing in terms of SOGI data collection, but a call to action for the industry to address the challenges in the system, including the lack of standard data sets for the collection of SOGI data. In addition, BCBSA is working with the National Minority Quality Forum to advance the standardization of SOGI data collection across the industry (Houston, 2023).
• Kaiser Permanente has been a leader in establishing systems of care geared toward transgender health. In 2017, Kaiser stated that all Kaiser Permanente regions are updating electronic health records (EHRs) to “allow for gender markers to indicate what primary care prompts should go with a patient’s record” as a means of improving care coordination (Seto, 2017). In 2017, Kaiser Permanente Mid-Atlantic States (KPMAS, 2018) announced a new EHR form that collects SOGI data and ensures that appropriate prompts based on anatomy for cancer screening are documented in a transgender registry. As of 2018, KPMAS’s EHR had 460 patients documented in a transgender registry, 164 (35 percent) of whom had an organ inventory completed (an organ inventory is also termed “anatomical inventory”; the importance of these inventories for TGD people and people with VSTs is discussed in Chapter 3).
• Optum Health announced in 2023 plans to build a “disparities analytics dashboard” to capture SOGI and other data important for documenting health equity among its members (Optum, 2023; Raths, 2023).

SOGI DATA COLLECTION WITHIN FEDERAL HEALTH SYSTEMS

In addition to operating public health insurance programs, the federal government operates three major systems of health care: (1) federally qualified health centers (FQHCs), (2) the Veteran’s Health Administration (VHA), and (3) the Indian Health Service (IHS). This section examines the SOGI data collection in place within these systems.

Federally Qualified Health Centers Funded by the Health Resources and Services Administration

FQHCs are safety net health care providers that deliver primary care in underserved communities regardless of insurance status or ability to pay. FQHCs are funded by the Health Resources and Services Administration (HRSA), and in 2022 delivered comprehensive primary and preventive health care to more than 30.5 million of the most vulnerable Americans, including nearly 1.4 million people experiencing homelessness; more than 395,000 veterans; and 24.2 million people who were either uninsured or covered by Medicaid or Medicare (HRSA, 2024b), including an estimated 1 in 5 Medicaid enrollees (Cole et al., 2021).¹³ HRSA (2024a) estimates that 90 percent of the patients served by FQHCs are at or below 200 percent of the federal poverty line. Given that TGD populations can experience disproportionately higher rates of poverty and lower rates of insurance coverage (Crissman et al., 2017; Dickey et al., 2016), they may benefit from access to FQHCs (Grasso et al., 2019).

To enhance care and equity among the populations it serves, including TGD patients, HRSA mandates that FQHCs collect and report SOGI data for all patients. Unlike other providers and health systems that may or may not utilize SOGI data collection capabilities within EHRs, FQHCs must report aggregate SOGI data for patients aged 18 and older as part of standard reporting of demographic data to the U.S. Bureau of Primary Health Care under the Uniform Data System (UDS) (HRSA, 2016).¹⁴ Under these requirements, FQHCs must collect and report data on sex recorded at birth (using the term “sex assigned at birth”) and gender identity. Table 4-3 illustrates the questions and response options required by HRSA under the UDS (HRSA, 2023).

HRSA’s SOGI reporting requirements—in place since 2016—are the only federal mandate requiring SOGI data collection in any U.S. health care setting. Yet despite this mandate, HRSA has faced challenges in getting FQHCs to comply with SOGI data reporting; these challenges are described in Chapter 3 of this report.

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¹³ Medicaid and Medicare beneficiaries may receive care and services from FQHCs. In these circumstances, SOGI data collection and reporting take place in accordance with HRSA requirements, even if Medicare and Medicaid providers elsewhere are not required to collect and report SOGI data. The same is true for people eligible for VHA or IHS programs who access care within an FQHC.

¹⁴ HRSA’s UDS captures a range of data on patient characteristics, services provided, and health outcomes across HRSA’s 1,400 health centers. Currently, HRSA (2024b) requires reporting of patient data in the aggregate, but through a recent UDS modernization initiative, certain FQHCs are now able to submit deidentified patient-level data to HRSA.

TABLE 4-3 Sex Assigned at Birth and Gender Identity Questions Within Federal Health Care Delivery Systems

Veterans Health Administration

VHA is an integrated health care system providing health care services to more than 9 million veterans (VA, 2023). VHA is not a health insurer but a health care system; eligible populations may have other types of health insurance coverage (such as Medicare, Medicaid, TRICARE, or a private insurance plan).¹⁵

To better serve TGD veterans and veterans with VSTs, VHA (2018) issued a national directive in 2011 that established policies for delivering affirming and respectful health care services to all people enrolled in the Department of Veterans Affairs (VA) health care system. This directive represented a significant advance in care for thousands of veterans: the VHA estimates that as of July 2023, its system served 28,659 TGD veterans (Matza and McConnell, 2023), and researchers estimate that TGD people are at least two to three times more likely to have served in the U.S. armed forces compared with cisgender people (Gates and Herman, 2014). The VHA serves many disabled veterans, some of whom may also be eligible for SSA programs,¹⁶ so SOGI data collection within the VHA is important for veterans applying for disability benefits.

Since 2018, the VHA has also had a directive in place for the collection of data on sex recorded at birth and gender identity (termed by within the VHA system as “birth sex” and “self-identified gender,” respectfully) (VHA, 2018). Table 4-3 displays the SOGI questions and response options used by the VHA. Unlike FQHCs, which are required by HRSA to collect and report SOGI data, the VHA system relies on veterans to self-report their sex and gender identity when applying for health benefits and when checking in for health care at a VHA facility. The VHA estimates that, currently, 25 percent

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¹⁵ Retired service members may be eligible for both TRICARE and Department of Veterans Affairs (VA) benefits. Service members who separate from service because of a service-connected injury or illness may become eligible for VA benefits but also retain certain TRICARE benefits depending on the nature of their illness or injury. In addition, all VHA facilities are TRICARE network providers, and TRICARE beneficiaries may access care through VHA providers. Finally, retired service members who qualify for SSDI (and as a result, Medicare) may retain TRICARE and/or VA benefits. Given the connections between these programs, SOGI data collection for retired service members may depend on whether an individual seeks care from VHA providers or from providers that seek reimbursement through TRICARE or Medicare (VA, 2021, 2022).

¹⁶ Many veterans are disabled. According to the Bureau of Labor Statistics, as of August 2022, 4.9 million veterans (27 percent of all veterans) had a service-connected disability. When veterans can show that they have a disability condition that was incurred or aggravated by military service, they are entitled to disability compensation provided by the VA. Veterans may be separately eligible for SSA disability programs or for both SSA and VA disability programs if they meet criteria for each. SSA gives processing priority to disability claims of veterans. The VA and SSA work cooperatively in these cases, with the VA sharing the medical evidence it has used to make its own disability decisions with SSA (BLS, 2023; SSA, 2021).

of veteran enrollee records contain gender identity information (Matza and McConnell, 2023).

While other components of the federal health care system may collect SOGI data at enrollment or patient encounters, VHA stands above others with requirements in place to use collected SOGI data to aid in clinical decision making. Within the VHA EHR system, clinical reminders are cued to “birth sex,” so TGD veterans receive appropriate preventive screening specific to their sex recorded at birth (VHA, 2018). In addition, the VHA system automatically uses sex recorded at birth data to determine appropriate laboratory ranges for certain conditions and doses for medication (along with data on height, weight, and age) (VHA, 2022).

Prior to 2018, when the singular demographic field of “sex” within the VHA records system represented both birth sex and gender identity, some veterans chose to change their birth sex information to better align with their gender identity. Now that the system captures birth sex and gender identity separately in a two-step question, VHA has had to contend with the fact that some “birth sex” records in their system do not align with the patient’s actual sex recorded at birth (Burgess et al., 2019). VHA (2022) does not have a policy to automatically change these records back but encourages providers to engage veterans in discussion about how information in the birth sex field may impact their care and why it is important for the birth sex field to be consistent with sex recorded at birth.

The VHA is currently working to better capture and expand veterans’ SOGI data by deploying new EHR systems that capture pronouns and administrative sex data in addition to birth sex and gender identity (Matza and McConnell, 2023). These data collection policies follow prior directives for all VHA providers to offer affirming care to TGD veterans and veterans with VSTs (Wolfe et al., 2023).

Indian Health Service

IHS, an agency within HHS, is responsible for providing comprehensive health services to approximately 2.6 million American Indians and Alaska Natives (AI/ANs) in 37 states. IHS either operates health facilities directly or funds tribes to operate health facilities themselves.¹⁷

AI/AN people who seek care within the IHS system are not required to have health insurance. Many AI/AN populations meet eligibility requirements for Medicaid and CHIP, and since Medicaid/CHIP coverage provides access to other providers or services beyond what is available through IHS alone, AI/AN populations may seek these coverage options (CMS, n.d.-a).

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¹⁷ Sometimes, tribes may operate a health facility that qualifies as an FQHC. In these cases, the IHS facility must meet HRSA requirements for SOGI data collection and reporting.

In 2019, IHS launched an initiative to train staff in the collection of voluntary SOGI data to help IHS “identify the health care needs and address the disparities of our Two Spirit, lesbian, gay, bisexual, transgender, and queer patients” (Haverkate, 2022). In June 2023, IHS created a standard for the capture of structured SOGI data within IHS patient medical records (Haverkate, 2023). Its standard registration intake form contains fields for birth sex, legal sex, gender identity, preferred name, pronouns, and sexual orientation. However, IHS policy does not require IHS providers to collect and report SOGI data or to use the standard intake form. As with VHA policy, patients receiving services within the IHS are allowed to provide SOGI data voluntarily for capture in their EHRs (IHS, 2023). Table 4-3 displays questions on sex recorded at birth and gender identity on the IHS standard intake form.

AI/AN people may be eligible for SSA disability programs if they meet eligibility requirements; overall, these populations experience chronic disease and related morbidity at a higher rate compared with other groups (Goins et al., 2007; Siordia et al., 2017). The Centers for Disease Control and Prevention (CDC, 2008) found that AI/AN people are 50.3 percent more likely to have a disability compared with the national average. Although the CDC estimate comes from the 2006 Behavioral Risk Factor Surveillance System surveys that use a broader definition of disability¹⁸ than would meet SSA requirements, these data are nonetheless an indicator of need within AI/AN populations.

SOGI DATA COLLECTION AMONG PROVIDERS AND HEALTH CARE DELIVERY SYSTEMS: STATE-LEVEL REQUIREMENTS AND INCENTIVES

As detailed in Chapter 3, while EHRs are required to have data fields that allow end users to record SOGI information, the federal government does not require providers and health care systems to use these data fields.¹⁹

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¹⁸ The 2006 Behavioral Risk Factor Surveillance System used a definition of disability consistent with Healthy People 2010, asking respondents: “Are you limited in any way in any activities because of physical, mental, or emotional problems?” and “Do you now have any health problem that requires you to use special equipment, such as a cane, a wheelchair, a special bed, or a special telephone?” Participants who responded “yes” to either question were classified as having a disability.

¹⁹ CMS’s Meaningful Use program incentivizes providers and health care systems to modernize data collection through EHRs. In 2015, CMS and the Office of the National Coordinator for Health Information Technology (ONC) added a requirement that EHRs certified under Stage 3 of the Meaningful Use program allow users to record SOGI data. Effective January 1, 2018, these requirements apply to EHR developers and vendors and health institutions and to practices that are using EHR systems as part of their participation in the Meaningful Use incentive program. Meaningful Use certification does not require providers or health care institutions to collect SOGI data; it requires only that certified EHR technologies have the ability (i.e., the data fields) to record such data (ONC and HHS, 2015).

Although some providers work in systems (e.g., VHA or an FQHC) that require or encourage SOGI reporting, many providers routinely fail to collect SOGI data, and the many barriers to SOGI data collection described in Chapter 3 are persistent problems. New efforts by CMS to collect SOGI data within its programs do not address these system-wide challenges.

CMS’s new model marketplace application—where adopted by states—changes SOGI data collection only at the point of application for Medicaid, CHIP, or a qualified health plan purchased through the state marketplace. The model application does not require providers who seek reimbursement from Medicaid/CHIP to collect or record SOGI data for their patients. Similarly, the questions proposed by CMS for inclusion in Medicare’s enrollment forms are applicable only for the collection of data at the point of enrollment; this proposed policy does not require providers who offer services for Medicare beneficiaries to collect or report SOGI data. Finally, neither model application impacts SOGI data collection within the employer-sponsored health insurance market or the providers who seek reimbursement from these insurers.

The collection of SOGI data at the point of enrollment is useful in helping public and private health insurers understand the populations they serve, but these efforts may not change what SOGI data are recorded in any given individual’s medical record. There are, however, a few current and former state-level efforts to require or incentivize providers and payers to collect and report SOGI data, as described below.

Oregon Health Authority: Proposed SOGI Reporting Requirements

Legislation in Oregon passed in 2021 requires the Oregon Health Authority to build a data collection system for SOGI data reporting and to create a grant program to help community partners and community-based organizations serving underrepresented communities collect and report these data (OEI, n.d.). As part of this effort, the Oregon Health Authority issued draft SOGI data collection recommendations in 2023 (OEI, 2023). Table 4-4 outlines Oregon’s proposed approach and the robust SOGI demographic questions recommended for inclusion. In addition, the draft recommendations put forward additional questions providers may ask of patients as part of ensuring quality medical care. These include a series of questions about gender-affirming care—for example, Are you currently taking gender-affirming hormones and/or hormone blockers? If Yes, when did you start? What is your current dose and frequency?—and best practices for taking a patient’s anatomical inventory (Oregon’s anatomical inventory questions are discussed in Chapter 3 of this report). The Oregon Health Authority plans to have its SOGI data collection system active “no sooner than” late 2024, and once the system is active, providers and insurers will be asked to submit SOGI data annually (OEI, n.d.). Patients will also have direct access to the system to update their SOGI information.

TABLE 4-4 Oregon Health Authority: Draft SOGI Data Collection Recommendations

NOTES: The Oregon Health Authority recommends including questions about sexual orientation, but these questions and responses are not listed here. The gender identity questions are recommended for inclusion in every setting, whereas the sex assigned at birth and pronouns questions are recommended for social services and eligibility systems.

SOURCE: OEI, 2023.

Incentives for Providers and Payers to Collect SOGI Data: Massachusetts and Oregon

State Medicaid programs use payment models to incentivize improved collection of health equity data (Ubri et al., 2023). Massachusetts, for example, is using innovative payment models to provide incentives for

providers to collect and report SOGI data. MassHealth’s Section 1115 Demonstration Waiver²⁰ financially incentivizes Accountable Care Organizations (ACOs)²¹ and ACO-participating hospitals to provide complete SOGI data starting in fiscal year 2023. The 1115 waiver application states that gender identity will be among the data collected by ACOs in Massachusetts but does not specify further what SOGI data will be collected (CMS, 2024b).

Oregon is planning a similar initiative. According to a 2023 survey of state Medicaid agencies and Medicaid Managed Care Organizations (MCOs)²² conducted by the National Opinion Research Center (NORC) at the University of Chicago, the Oregon Health Authority is exploring ways to incentivize hospitals and other providers participating in Coordinated Care Organizations within the state to report SOGI data (Ubri et al., 2023). NORC reports that Medicaid leaders in other states are beginning to recognize the importance of collecting SOGI data to better understand the experiences and needs of enrollees. Overall, however, states are much further along with incentivizing data collection on race, ethnicity, language, and disability, and few MCOs collect SOGI data (Ubri et al., 2023).

Building SOGI Data Collection Capacity among Providers: Connecticut

From 2015 to 2020, the state of Connecticut received federal funding through a State Innovation Model (SIM) grant to test reforms to health care payment and service delivery models within the state. Connecticut’s SIM focused in part on health equity and was aimed at building capacity at participating FQHCs and patient-centered medical homes to collect SOGI data (Connecticut Office of Health Strategy, 2020). Although the SIM grant has ended, the Connecticut Office of Health Strategy reports that all health care entities participating in the SIM developed infrastructure and workflows for collecting SOGI data and most began to document these data in their EHR systems.

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²⁰ Medicaid 1115 demonstration waivers allow the Secretary of Health and Human Services to “waive” certain provisions of Medicaid law to give states additional flexibility to design and improve their Medicaid or CHIP programs. Massachusetts has received a waiver from CMS to use an innovative service delivery system model (the ACO), with the goal of improving care, increasing efficiency, and reducing costs.

²¹ ACOs are a delivery system model designed to improve care coordination and delivery by holding providers financially accountable for the health of the patient population they serve. More than 80 percent of eligible MassHealth members are covered by ACOs in the state (MassHealth, 2022).

²² States design and administer their own Medicaid programs within federal rules. Many states elect to administer Medicaid through contracts with MCOs, which accept a per member, per month fee from the state to organize care delivery and manage cost and quality. MCOs are the dominant delivery system for Medicaid enrollees, and 72 percent of Medicaid beneficiaries are enrolled in an MCO (Hinton and Raphel, 2023).

TABLE 4-5 Gender Identity Question Included in Washington State’s Comprehensive Hospital Abstract Reporting System

SOURCE: Washington State Health Care Authority, 2022b.

Hospital Requirements for SOGI Reporting: Washington State

In 2021, Washington state became the first in the United States to require hospitals to collect and submit detailed patient self-identified demographic data, including race, ethnicity, language, disabilities, sexual orientation, and gender identity (Strong, 2022). Hospitals in the state had to comply with these new rules by January 1, 2023, and had to report on patient sex recorded at birth and gender identity to the state’s Comprehensive Hospital Abstract Reporting System database (Washington State Health Care Authority, 2022b). The 17 response options for gender identity are listed in Table 4-5. While reporting demographic information to the Department of Health is mandatory for hospitals, patient participation is voluntary.

FEDERAL SURVEYS AND SOGI DATA COLLECTION

Federal surveys play a vital role in generating the data needed by government agencies to understand the demographics of the American public in support of evidence-based policy making. Measuring sexual and gender minority populations within federal surveys improves understanding of these populations, helping the public health and health care systems identify and track health disparities among TGD people and people with VSTs, and design and monitor strategies for reducing these disparities.

In July 2021, for example, the U.S. Census Bureau began including questions on sex assigned at birth, current gender identity, and sexual

orientation in the Household Pulse Survey (HPS) (Anderson et al., 2021). National HPS data from 2021 and 2022 show that LGBT respondents reported experiencing greater anxiety and depression compared with non-LGBT respondents (Marlay et al., 2022). Examining HPS data specific to California, the California Budget and Policy Center found that about 6 in 10 LGBTQ+ Californians in households with annual incomes of less than $50,000 experienced poor mental health, compared with only 4 in 10 non-LGBTQ+ Californians in that same income category (Kitson and Ramos-Yamamoto, 2022). Given this high rate of poor mental health among low-income LGBTQ+ adults in California, the California Budget and Policy Center made recommendations for state policy makers to bolster the state’s mental health workforce in order to reduce disparities for LGBTQ+ adults (e.g., by ensuring that behavioral health care providers serving people with Medi-Cal receive LGBTQ+-affirming training). These data points are coming at an important juncture for California, as the state legislature recently funded new initiatives for providing training on inclusive care for TGD people and people with VSTs within continuing medical education curricula (Coursolle, 2023), and as California’s governor is looking to modernize the state’s mental health system in an effort to better prioritize residents with the most severe mental health needs (Office of Governor Gavin Newsom, 2023).

California’s use of HPS data is just one example of how, armed with SOGI data, policy makers can quickly target funding and policies to better serve TGD people and people with VSTs. Increasingly, other federal surveys are collecting and reporting SOGI data, and because of data collection on gender identity, federal surveys now can examine tobacco use (CMS, n.d.-b.), educational experiences (NCES, 2023), and patterns of violence against TGD people (Truman and Morgan, 2022). Coupling SOGI data with other measures—for example, many federal surveys collect data on disability status (CDC, 2020)—can help researchers and policy makers understand and describe how the intersectionality of various identities impacts health and well-being.

However, not every federal survey includes the gender identity questions necessary to fully explore health and disparities among TGD people and people with VSTs. In 2022, the National Academies examined the state of SOGI data collection across 47 federal surveys and other data systems, identifying 24 federal surveys that include one or more SOGI data questions (NASEM, 2022). As in other areas of SOGI data collection, terms and response options vary widely across federal surveys. In addition, fewer federal surveys collect any data on gender identity, and only 12 of the surveys examined in the National Academies report collect gender identity data using a two-step question methodology (NASEM, 2022). Furthermore, where surveys include a question on sex recorded at birth, most include

only male and female as response options and do not allow free-text responses that would enable respondents to indicate VSTs.

The variability in SOGI data collection overall and gender identity data in particular stems from the fact that federal law does not require federal surveys to collect any SOGI data beyond asking about “biological sex” (male/female).²³ However, federal surveys are increasingly asking SOGI questions beyond what is required by law, prompted in part by a January 2023 White House Office of Management and Budget (OMB) report outlining best practices for the collection of self-reported SOGI data in federal statistical surveys, including using a two-step methodology for collecting data on sex recorded at birth and gender identity (Office of the Chief Statistician of the United States, 2023). Building on recommendations from the OMB report, the Census Bureau is in the process of testing SOGI questions to be included in the American Community Survey (ACS).²⁴ In addition, beginning in 2023, the National Survey on Drug Use and Health (an annual survey sponsored by the Substance Abuse and Mental Health Services Administration) asked respondents about their sex assigned at birth and their gender identity (SAMHSA, 2023).

Increased and expanded SOGI data collection will greatly enhance documentation of the experience of TGD people and may also provide opportunities to document people with VSTs.

Federal Surveys, SOGI Data, and SSA

Federal surveys, by their nature, are at the population level and cannot supplement information about any particular SSA disability applicant. However, data collected from various federal surveys may help SSA

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²³ Federal surveys are not required to collect SOGI data. While Section 4302 of the ACA contains provisions to strengthen federal data collection by requiring that all national federal data collection efforts collect information on race, ethnicity, sex, primary language, and disability status, current minimum data collection standards published by HHS in 2011 define the category of sex only as “biological sex.” HHS considered sexual orientation and gender identity to be concepts separate from biological sex and did not address them within the 2011 standards. However, the 2011 standards are just the minimum data collection requirements, and ACA § 4302 allows for federal surveys to collect additional data beyond what is described in the law (ASPE, 2011).

²⁴ Agency Information Collection Activities; Submission to the Office of Management and Budget (OMB) for Review and Approval; Comment Request; American Community Survey Methods Panel: 2024 Sexual Orientation and Gender Identity Test, 88 Fed. Reg. 64404-64407 (September 19, 2023). While the ACS is not a health care survey, it is still an important tool for advancing health care equity. In April 2023, for example, researchers in the U.S. Census Bureau linked ACS data with Medicaid data, which helped identify gaps in estimates about health disparities. Including SOGI data in the ACS adds an important demographic layer to this information (Limburg, 2023).

understand important characteristics of the populations who are likely to apply for and benefit from SSI/SSDI. For example, where federal surveys ask about both SOGI data and health insurance coverage—the Census Bureau Household Pulse Survey, for example, includes questions on health insurance (NCHS, 2023)—this may help illuminate access to health care coverage for TGD people and people with VSTs where there are gaps in SOGI data collection across Medicare, Medicaid, state exchanges, and private insurers. As this data collection evolves and improves, it may help SSA better understand the populations applying for disability benefits, particularly those who access insurance through Medicaid.

Currently, the National Beneficiary Survey administered by SSA asks only a question about biological sex (response options: male or female) (McDonald et al., 2021). While other federal surveys may provide useful data points for SSA, only the National Beneficiary Survey is geared toward the populations that receive SSI and SSDI. Including questions about sex recorded at birth and gender identity in this survey would enable SSA to better understand the experience of populations it serves who are TGD or have VSTs.

SUMMARY OF KEY POINTS

SOGI data collection is increasing across the U.S. health care system through promising enrollment policies within Medicaid and Medicare, focused efforts within private health plans and health systems, innovative state-level incentives to providers and payers, and expanded survey instruments. However, many of these initiatives are only just emerging, and almost all efforts to collect and report these data are optional or voluntary, with the exception of the HRSA mandate for FQHCs to collect SOGI data from their patients and new efforts in Oregon and Washington to require providers to submit SOGI data. As described in Chapter 3, optional reporting requirements have not produced robust SOGI data collection, and there are significant gaps in data collection even where collection and reporting of SOGI data are mandatory. Thus it could still be a long time before robust or even adequate SOGI data collection occurs across the system.

While this committee expects that SOGI data collection will continue to evolve, the health care system today is far from achieving the goals of SOGI data collection in ways that can support care for TGD people and people with VSTs. For this reason, SSA may best serve TGD applicants and applicants with VSTs by conducting its own SOGI data collection at the point of application. This approach would help fill the gaps where health care providers, insurers, and institutions are not yet collecting the patient data that SSA may need to fairly adjudicate disability applications from TGD people and people with VSTs. Asking SOGI questions of applicants up front allows

applicants to choose how to report their identity to SSA (rather than having adjudicators piece together their identity through other information in the medical record). SSA disability application forms give prompts to applicants to “explain in remarks” additional details about various questions on the application (e.g., citizenship status, military service), and similar prompts could be included alongside SOGI data questions to invite applicants to describe additional information related to gender identity, sex recorded at birth, or other SOGI data. However, it is important that applicants always have the option to keep SOGI data private from SSA.

SSA could also consider whether to include SOGI questions in its National Beneficiary Survey. While other federal surveys increasingly ask SOGI questions, these survey instruments are not geared toward the specific populations served by SSA; the inclusion of SOGI data in the National Beneficiary Survey could therefore help SSA better understand the experience of the sexual and gender minority populations it serves.

REFERENCES

use and health. Rockville, MD: Department of Health and Human Services. https://www.samhsa.gov/data/sites/default/files/reports/rpt41899/2022NSDUHLGBBrief061623.pdf (accessed March 13, 2024).

Seto, B. 2017. A coordinated transgender person care pathway. Permanente Medicine. https://permanente.org/coordinated-transgender-person-care-pathway/ (accessed March 13, 2024).

Siordia, C., R. A. Bell, and S. L. Haileselassie. 2017. Prevalence and risk for negative disability outcomes between American Indians-Alaskan Natives and other race-ethnic groups in the southwestern United States. Journal of Racial & Ethnic Health Disparities 4(2):195–200. https://doi.org/10.1007/s40615-016-0218-z

Social Security Administration. n.d. Disability Benefits, Your Continuing Eligibility. Baltimore, MD. https://www.ssa.gov/benefits/disability/work.html (accessed March 13, 2024).

SSA (Social Security Administration). 2021. Social security disability and veterans affairs disability—How do they compare? Publication No. 64-125. Baltimore, MD. https://www.ssa.gov/pubs/EN-64-125.pdf (accessed March 13, 2024).

SSA. 2024a. A guide to supplemental security insurance (SSI) for groups and organizations. Publication No. 05-11015. Baltimore, MD. https://www.ssa.gov/pubs/EN-05-11015.pdf (accessed March 13, 2024).

SSA. 2024b. Disability benefits: How you qualify. https://www.ssa.gov/benefits/disability/qualify.html (accessed March 13, 2024).

SSA. 2024c. Medicare. Publication No. 05-10043. Baltimore, MD. https://www.ssa.gov/pubs/EN-05-10043.pdf (accessed March 13, 2024).

SSA. 2024d. Monthly statistical snapshot, January 2024. Baltimore, MD. https://www.ssa.gov/policy/docs/quickfacts/stat_snapshot/2024-02.pdf (accessed March 13, 2024).

SSA. 2024e. Program operations manual system (POMS). http://policy.ssa.gov/poms.nsf/lnx/0501715010 (accessed March 13, 2024).

SSA. 2024f. SSI monthly statistics, January 2024. https://www.ssa.gov/policy/docs/statcomps/ssi_monthly/index.html (accessed March 13, 2024).

SSA. 2024g. Supplemental Security Income (SSI) and eligibility for other government and state programs. https://www.ssa.gov/ssi/text-other-ussi.htm (accessed March 13, 2024).

Straw, T. 2019. “Direct enrollment” in marketplace coverage lacks protections for consumers, exposes them to harm. Washington, DC: Center on Budget and Policy Priorities. https://www.cbpp.org/research/direct-enrollment-in-marketplace-coverage-lacks-protections-for-consumers-exposes-them-to (accessed March 13, 2024).

Strong, A. 2022. Beginning January 1, 2023–New rules for hospital patient discharge information reporting (2021 Session E2SHB 1272). Seattle, WA: Washington State Hospital Association. https://www.wsha.org/articles/beginning-january-1-2023-new-rules-for-hospital-patient-discharge-information-reporting-2021-session-e2shb-1272/ (accessed March 13, 2024).

TRICARE. 2023. Beneficiaries eligible for TRICARE and Medicare. Falls Church, VA: Defense Health Agency. https://www.tricare.mil/Plans/Eligibility/MedicareEligible (accessed March 13, 2024).

Truman, J., and R. Morgan. 2022. Statistical brief: Violent victimization by sexual orientation and gender identity, 2017–2020. Washington, DC: U.S. Department of Justice. https://bjs.ojp.gov/content/pub/pdf/vvsogi1720.pdf (accessed March 13, 2024).

VA (U.S. Department of Veterans Affairs). 2021. TRICARE and Veterans Affairs: An overview of how TRICARE and the Department of Veterans Affairs work together to provide health benefits. Presentation for the Department of Defense, Defense Health Agency. https://www.health.mil/Reference-Center/Presentations/2021/11/01/TRICARE-and-Veterans-Affairs-Slides (accessed March 13, 2024).

VA. 2022. VA/DoD Health Affairs, VA & TRICARE information. https://www.va.gov/VADODHEALTH/TRICARE.asp (accessed March 13, 2024).