Sexual and Gender Minority Demographic Data: Inclusion in Medical Records, National Surveys, and Public Health Research

  • Date: Oct 26 2021
  • Policy Number: 202111

Key Words: Data, Gay Lesbian Bisexual Transgender

Abstract
Public health issues ranging from access to health care to homelessness and smoking cessation cannot fully be addressed without first describing the scope of the issues and then empirically tracking initiatives to ameliorate them. Lesbian, gay, bisexual, transgender, queer, asexual, intersex, and two-spirit people, frequently referred to as sexual and gender minorities (SGMs), must be represented in administrative data (e.g., patient intake forms and electronic health records) and national surveys and other research for this reason. This policy statement uses a variety of terms depending on the specific context. Increasingly, public health publications seek to address health disparities experienced by the SGM population, and yet the relative size of the population is still unknown. Prior attempts by the Department of Health and Human Services to incorporate sexual orientation and gender identity data collection in national surveys, electronic health record systems adopted by facilities that receive federal funding, and health insurance marketplace forms have been influenced by the presidential administration, requiring consistent advocacy from the public health scientific community for collection of this important and life-saving data.

Relationship to Current APHA Policy Statements
An increasingly large number of APHA policy statements are inclusive of sexual and gender minorities (SGMs). The policy proposed here expands on all of these policies by advocating for increasing the collection of data that can further strengthen and support the other policies; however, it can also be considered independent since it would affect all policies in which health disparities are addressed at the population level, even policies that do not specifically mention SGMs. Those policies that directly relate to and highlight specific inclusion of SGM populations are included in reverse chronological order from the year of APHA adoption:

  • APHA Policy Statement 201912: Addressing Alcohol-Related Harm: A Population Level Response
  • APHA Policy Statement 201811: Addressing Law Enforcement Violence as a Public Health Issue
  • APHA Policy Statement 20189: Achieving Health Equity in the United States
  • APHA Policy Statement 20185: Violence is a Public Health Issue: Public Health is Essential to Understanding and Treating Violence in the U.S
  • APHA Policy Statement 20178: Housing and Homelessness as a Public Health Issue
  • APHA Policy Statement 20169: Promoting Transgender and Gender Minority Health through Inclusive Policies and Practices
  • APHA Policy Statement 201415: Support for Social Determinants of Behavioral Health and Pathways for Integrated and Better Public Health
  • APHA Policy Statement20143: Sexuality Education as Part of a Comprehensive Health Education Program in K to 12 Schools
  • APHA Policy Statement 20142: Reduction of Bullying to Address Health Disparities Among LGBT Youth APHA
  • APHA Policy Statement 200410: Proposed Resolution Condemning Actions Against LGBT and HIV Related Research and Service Delivery
  • APHA Policy Statement 9933: The Need for Acknowledging Transgendered Individuals within Research and Clinical Practice

Problem Statement
Public health funding, prioritization, and advocacy are grounded in data.[1] When there are few or no data, the first priority becomes collecting data to identify gaps and opportunities to address disparities and promote equity.[1] The last decade has critically advanced public knowledge and social acceptance of SGMs.[2] SGM populations are more visible in the media and popular culture, yet public health and health care entities still lack comprehensive data to describe the demographics, health, and well-being of these populations.[1,2] Despite the advances in representation in mainstream culture in the United States, the long history of stigma, marginalization, and harmful stereotypes persists in local and state laws, especially for transgender people.[1–3] The range and diversity of anti-LGBTQ (lesbian, gay, bisexual, transgender, queer or questioning) sentiment and legal forms of discrimination persist in influencing issues from education and youth sports to health and employment access.[1–3] These are all critical issues, and for the purposes of this policy statement the focus is on building the case for data to better describe the health, well-being, disparities, and ultimately success of SGMs. It is difficult to build a case to dismantle systemic oppression without data to support both the moral and business case for inclusion.  

Understanding barriers to wider SGM data collection: Many challenges around terminology within SGM populations persist, but there are some clear distinctions to be made initially. Sexual orientation, or sexual identity, comprises three components: identity, behavior, and attraction. The terminology used to describe sexual orientation is fluid, temporal, and culturally specific. For the purposes of demographic data collection, a single question cannot capture the complexity of a person’s sexual orientation, although it is often reduced to identification as gay, lesbian, bisexual, or straight. Gender identity is people’s internal sense of who they are. If people’s gender identity aligns with the sex they were assigned at birth, they are cisgender. Many people whose gender identity does not align with the sex they were assigned at birth identify as transgender. Others identify with only their self-identified gender; that is, when presented with a binary sex question with only male and female response options, they will select the option that aligns with their identity as opposed to what they were assigned at birth. Sexual orientation and gender identity (SOGI) can be complex constructs to measure, but it is imperative to expand on the limited SGM data to further address LGBTQ+ health disparities.  

Since the 2011 release of the Institute of Medicine’s The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding, significant progress has been made toward including demographic questions on SOGI in medical records; national, state, and local population surveys; administrative data systems; and public health research.[1] In 2015, the Sexual and Gender Minority Research Office was established at the National Institutes of Health,[2] and Healthy People 2020 set ambitious goals to double the number of national data collection mechanisms asking questions about sexual orientation and gender identity.[3] Despite concerted efforts, the Healthy People 2020 goals were not met, but now even more goals have been added and expanded for Healthy People 2030, including three specifically focused on youth.[4] 

Researchers have produced estimates on SGM populations based on limited data from sources that do not ask people to self-identify as a sexual and/or gender minority.[5] For example, demographer Gary Gates extrapolated LGB population estimates from American Community Survey data on same-sex households,[5] and Gallup, a national research firm, used polling methods more frequently associated with opinion research than public health research to produce estimates of the size of the U.S. LGBT population.[6] Researchers affiliated with the Veterans Health Administration and the Centers for Medicare & Medicaid Services have attempted to create transgender population estimates within their respective systems (the Department of Veterans Affairs and Medicare) using administrative data either through electronic medical records[7] or through procedure and billing code analyses.[8] 

The necessity for data to document the size and needs of SGM populations is relevant at all life stages. Some disparities affecting SGM populations persist throughout the life course, and there are additional compounding factors specific to the young, to adults, and to aging and older adults.[1] The American Medical Association, the American Psychological Association, and the American Psychiatric Association, among others, have supported inclusive and affirming practices for caring for SGM youth and adults.[9–12] Due to inconsistent SGM demographic data collection, there continues to be no expectation of SGM data (or negative feedback for the lack of such data) in research from national surveys. Sexual orientation and gender identity are not considered default demographic information, in the same way that binary sex is the ultimate dichotomous variable, even in secondary analyses from data sources that collect this critical information.

Sexual orientation is composed of three constructs: sexual orientation identity (what is commonly meant by “sexual orientation,” referring to self-identification as heterosexual, gay/lesbian, bisexual, or another sexual orientation), sexual attraction, and sexual behavior.[1] Although advances have been made in collecting sexual orientation data for adults in some national surveys (e.g., the National Health Interview Survey, the National Survey on Family Growth, and the National Survey on Drug Use and Health),[13] challenges remain in collecting data for SGM youth.[14] The limited information available from the 2017 Youth Risk Behavior Survey (YRBS) indicates that sexual minority youth are nearly twice as likely as their heterosexual peers to have ever used illicit drugs (23.1% versus 12.3%) and to have misused prescription opioids (24.3% versus 12.9%).[15] Regarding sexual minority youth violence and victimization, students who identify as lesbian, gay, or bisexual exhibit significantly higher rates of experiencing electronic (online) bullying (27.1% versus 13.3%), being bullied at school (33.0% versus 17.1%), being forced to have sex (21.9% versus 5.4%), experiencing physical violence (17.2% versus 6.4%), and experiencing sexual dating violence (15.8% versus 5.5%).[15] These experiences may contribute to the fact that sexual minority youth are more than four times as likely as their heterosexual peers to attempt suicide (23.0% versus 5.4%) or to be injured in a suicide attempt (7.5% versus 1.7%).[15] The question used on the YRBS to assess sexual orientation is “Which of the following best describes you?” Responses: are (a) heterosexual (straight), (b) gay or lesbian, (c) bisexual, and (d) not sure.[15] At least part of the resistance to collecting SOGI data in health care settings, especially data for transgender youth, may have to do with provider comfort levels.[16] Continued stigma and discrimination persist for adult SGMs; among youth, however, their sexual orientation and gender minority may simply be dismissed as a phase, something that they will outgrow when they assimilate to cisgender heteronormative adulthood or, even worse, something that can be fixed. 

Only in the past couple of years has YRBS data become available for trans and gender nonconforming youth,[17] but data from other research with smaller sample sizes have provided ongoing evidence of negative health outcomes. Although family rejection and resulting homelessness disproportionately affect transgender youth, there is not systematic collection of SOGI data in any social services documentation.[18] LGBTQ youth potentially represent 30%–45% of the homeless youth population.[18] LGBTQ homeless youth are significantly more likely than heterosexual and cisgender homeless youth to have major depressive episodes, posttraumatic stress disorder, suicidal ideation, and at least one suicide attempt. In addition, they have increased rates of sexual and violence victimization.[19,20]

We know that accumulated trauma and minority stress throughout the life course can have long-lasting—and even permanent—effects on individual health and well-being.[21,22] In addition, data for a number of identity groups within diverse SGM populations are even less available, although we know qualitatively that they experience health disparities and are effectively invisible in survey, administrative, and demographic data. For example, information on intersex status is important to collect along with SGM status, as anatomy drives relevant clinical care decisions and appropriate life-saving screenings. However, there remains a paucity of research on appropriate and long-term clinical guidance, access, and care provision and a need for enhanced knowledge on how to adequately collect, classify, and use intersex information.[23] Other research indicates that in health care settings providers are concerned that solely focusing on identity-based questions for SGMs might obscure information about anatomy-based health risks and preventive care.[24] 

Since 2013, the National Health Interview Survey has collected sexual orientation data for adults 18 years and older,[25] but no similar question has been added for gender identity. An example of an option for deriving population estimates for the transgender population (for a single year without combining data across multiple years as with the Behavioral Risk Factor Surveillance System) was a survey conducted by the independent National Center for Transgender Equality in 2015 that involved many of the exact wordings of health questions already present in national surveys for direct comparison.[26] The findings from the 2015 U.S. Transgender Survey indicate severe economic hardship, high rates of delayed or neglected care, and high rates of fear and concern about interactions with health care providers.[26] In addition to having worse health outcomes due to minority stress, transgender people face many other health challenges as a result of stigma and often the burden of educating their health care providers about transgender-specific health.[27]

There continues to be limited data on health and related social determinants for older SGM adults. Medicare and the Veterans Health Administration have resorted to using administrative records to passively identify potential transgender patients.[7,8,28,29] According to the few data available, there are notable health disparities; for example, transgender Medicare beneficiaries (who may be any age above 18 years) are twice as likely to have six or more chronic conditions as their cisgender peers.[30] There is no way to confirm these findings until there is systematic collection of gender identity data in medical and administrative records to validate the passive analysis methods used from claims data. Similar to collection of any other personally identifiable information, all privacy practices and laws should be applicable to collection of SGM data.

Evidence-Based Strategies to Address the Problem
The National Institute of Health’s Sexual and Gender Minority Research Office includes encouraging data collection related to SGM populations in research and the biomedical research workforce as one of the four operational goals in its strategic plan for fiscal years 2021–2025.[2] A significant amount of research and question testing has already contributed to validated options for including SOGI questions in medical records[31] and survey or research data collection formats.[32,33] Some federal health surveys have implemented questions on sexual orientation, although research is still exploring how best to ask and incorporate such questions.[32] Gender identity questions are included much less frequently. The standard sex question (“Are you male or female?”) has traditionally been a part of standard demographic information sections; however, when a two-step gender identity question has been used, it has been shown through rigorous testing in a variety of populations that those who are not transgender have no difficulty selecting the appropriate response for themselves, even if they do not know or understand what gender identity or transgender status is.[33,34]  

Although there are several variations of the two-step gender identity question, they all share a similar structure, with one question asking respondents to indicate how they identify themselves and a second question asking what sex they were assigned at birth.[35] The response options for the self-identification question can include female, male, transgender, and non-identification as female, male, or transgender.[35] Another possibility is separating the transgender response category into specific options for trans men, trans women, and nonbinary people.[35] The two-step gender identity question has even been tested with older adult populations (in both English and Spanish[35,36]) to determine whether it makes a difference if current gender identity or sex assigned at birth is presented first.[37]
     
There is more work to be done, specifically in public health research and survey methodology, since most questions about SGM populations are not culturally specific and we run the risk of erasing increasingly marginalized populations such as indigenous two-spirit people. A January 2020 PubMed search using variations of “two-spirit,” “data collection,” “research inclusion,” and “demographic data” returned no results that specifically addressed including two-spirit identity in demographic or administrative records, national surveys, or public health research studies not already focused on indigenous communities. 

APHA already works across many sections in support of the inclusion of SGMs in a culture of health and promoting health equity for all. APHA can champion the inclusion of SGM data through its internal policies and practices (e.g., including a “pronouns” identification in addition to the traditional salutation dropdown option in online registrations and forms). APHA can also provide guidance for its members in the form of a toolkit for including pronouns in their professional signature blocks, adding SGM demographic questions to their workplace forms and/or surveys, and normalizing introductions at Webinars and meetings with pronoun statements. The purpose of including pronouns is not simply to prevent confusion in terms of misgendering someone; it can help cisgender people show solidarity with trans and gender nonconforming individuals. Including sexual orientation in all APHA materials that collect race and ethnicity data is another great action step. Supporting SGM data collection is a logical, and easy, next step in formalizing a policy that is already widely practiced throughout APHA components.

These recommendations can easily be translated into action steps and toolkits for both research and clinical practice that are portable to communities, affiliates, and state, local, and school-based health departments.

Opposing Arguments/Evidence
According to the Family Research Council, “homosexual conduct is harmful to the persons who engage in it and to society at large.”[38] This view persists in values-based arguments against broader LGBTQ+ inclusion and antidiscrimination efforts in all areas, and it has proven especially harmful to transgender youth in the wave of harmful policies across the country in 2020–2021. 

One opposing argument to collecting SGM data is that clinicians, national surveys, and organizations may not be willing to ask about SOGI information because of personal values or religious beliefs conflicts. Qualitative analyses of physician surveys have identified autonomy and religion as reasons to refuse treatment to LGBT+ patients, highlighting the need to reduce the knowledge gap with respect to how religiosity can affect LGBT+ patient care.[39,40] This knowledge gap can be reduced by supporting training programs and health education with the goal of delivering inclusive sexual health care based on clinical importance.[41] Without this, SGM individuals may continue to postpone seeking care due to fear of experiencing discrimination.[42,43] 

Another opposing argument is centered on the difficulty associated with common vernacular and terminology changes over time. While there are no standards set for these questions that can be expected to endure over time, allowing open-ended or multiple responses will provide actionable information that can inform subsequent iterations of survey questions.[44]

Furthermore, if this information remains unknown, we cannot address concerns and health issues in which SGMs are more likely to be at risk, as national surveys in both the United States and England have identified poorer health and worse health care experiences among sexual and gender minorities than among straight respondents.[45,46] There are also potential negative effects of being a sexual and gender minority among cancer survivors, who have reported anxiety, invisibility, isolation, and frustration.[47] 

Asking questions on SGM identity is an acknowledgment from providers and organizations that this information is important to general health and can decrease minority stress among the LGBT community, who may view the use of these questions as inclusive and affirming. When asked appropriately, uncovering patients’ SGM status may reduce their hesitation to self-report this information if not prompted, decrease minority stress related to patients disclosing information on their own volition, and allow for a better patient-provider relationship.[48] 

Even among those who are generally supportive of improved knowledge for SGM populations, there are concerns that with declining national survey response rates, more data does not necessarily mean better data.[49] For national surveys, the cost of a single question can often be tens of thousands of dollars, and questions on SGM identity must compete with questions on other important demographic information (e.g., income). Survey questions on household income are considered standard and are used as a poverty measure; however, they are more sensitive and less likely to generate responses than questions about sexual orientation and gender identity.[49] Based on this evidence, the argument for adding SOGI questions to a survey even in the case of a low response rate would be justified because of the extent to which the available data would be useful in addressing disparities.[49]

Findings from an exploratory focus group on the feasibility of adding gender identity questions to the U.S. Census Bureau’s Current Population Survey indicate that, even among the self-identified transgender population, there is wide variation in preference for gender identity response options within the possible question frameworks.[50] The focus group participants also indicated some hesitancy and caution about having their gender identity linked to their name and responses on federal surveys and feared potential abuse by government entities because of their gender identity.[50] Given concerns about retaliation or retribution for sharing one’s SGM identity, it may be a waste of time, money, and valuable space in surveys, medical records, and public health research to include questions for which response rates may be low.  

As for medical records (e.g., intake forms and electronic health records), despite the push for including fields such as “preferred pronoun,” the constantly evolving nature of the terminology SGM populations use to identify themselves is problematic with respect to how electronic health records have traditionally been structured to reflect available anatomy for preventive screening and health risks.[50]

Action Steps
APHA:

  1. Urges Congress and state legislatures to enact legislation to explicitly incorporate SGM demographic data into all official places where demographic information such as race and ethnicity is included.
  2. Urges Congress and state legislatures to incorporate into legislation language that is clearly inclusive of SGM people and does not interpret gender as a binary.
  3. Urges public and private entities to develop supportive public comments on federal government data collection platforms for SGM demographic data inclusion in federally funded national and state surveys.
  4. Encourages legislative and judicial entities to expand SGM representation in demographic data collection, including but not limited to electronic health records, survey data, administrative data systems, and public health research.
  5. Encourages academic and nonprofit entities to expand SGM representation in demographic data collection, including but not limited to electronic health records, survey data, administrative data systems, and public health research.
  6. Encourages public health initiatives and programs to promote inclusion of SGM groups.
  7. Urges engagement in partnerships with entities working to educate and inform medical facilities (e.g., health centers, hospitals, urgent care facilities) with respect to uptake of SGM data inclusion in electronic medical records, patient satisfaction surveys, and other data collection mechanisms.
  8. Urges entities to include nondiscrimination protections for LGBTQ+ people (including but not limited to data privacy) so that they can feel safe disclosing their sexual orientation and gender identity, especially in health care and public health settings.
  9. Urges increased advocacy for public health research and research funding agencies to include demographic data on sexual orientation and gender identity in research populations.
  10. Encourages public health researchers to actively include SGM populations in their research on all public health topics, including those not specifically focused on SGM populations. 
  11. Encourages entities and organizations to build resources and toolkits for public health researchers so that they can begin including sexual orientation and gender identity questions in APHA research presentations.

References
1. Institute of Medicine. The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. Washington, DC: National Academies Press; 2011.
2. National Institutes of Health. Sexual and Gender Minority Research Office. Available at: https://dpcpsi.nih.gov/sgmro. Accessed June 28, 2021.
3. Office of Disease Prevention and Health Promotion. Healthy People 2020: LGBT health topic area. Available at: https://www.healthypeople.gov/2020/topics-objectives/topic/lesbian-gay-bisexual-and-transgender-health/objectives. Accessed June 28, 2021.
4. U.S. Department of Health and Human Services. LGBT: Healthy People 2030. Available at: https://health.gov/healthypeople/objectives-and-data/browse-objectives/lgbt. Accessed June 28, 2021.
5. Gates G. How Many People Are Lesbian, Gay, Bisexual, and Transgender? Los Angeles: Williams Institute; 2011.
6. Gallup. LGBT identification rises to 5.6% in latest U.S. estimate. Available at: https://news.gallup.com/poll/329708/lgbt-identification-rises-latest-estimate.aspx. Accessed June 28, 2021.
7. Kauth M, Shipherd J, Lindsay J, Blosnich J, Brown G, Jones K. Access to care for transgender veterans in the Veterans Health Administration: 2006–2013. Am J Public Health. 2014;104(suppl 4):S532–S534.
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37. Federal Interagency Working Group on Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys. Updates on terminology of sexual orientation and gender identity survey measures. Available at: https://nces.ed.gov/FCSM/pdf/FCSM_SOGI_Terminology_FY20_Report_FINAL.pdf. Accessed June 28, 2021.
38. Sprigg P. Are sexual orientation change efforts (SOCE) effective? Are they harmful? What the evidence shows. Available at: https://downloads.frc.org/EF/EF18I04.pdf. Accessed June 28, 2021.
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40. Prairie T, Wrye B, Bowman A, Weatherby N, Thareja G. Does location of practice or religiosity predict negative physician attitudes or beliefs toward LGB+ individuals? J Relig Health. 2019;58:2208–2218.
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43. Kachen A, Pharr J. Health care access and utilization by transgender populations: a United States transgender survey study. Transgender Health. 2020;5:141–148.
44. Suen LW. What sexual and gender minority people want researchers to know about sexual orientation and gender identity questions: a qualitative study. Arch Sex Behav. 2020;49(7):2301–2318. 
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47. Boehmer U, Gereige J, Winter M, Ozonoff A. Cancer survivors’ access to care and quality of life: do sexual minorities fare worse than heterosexuals? Cancer. 2019;125(17):3079–3085. 
48. Cahill S, Grasso C, Keuroghlian A, Sciortino C, Mayer K. Sexual and gender minority health in the COVID-19 pandemic: why data collection and combatting discrimination matter now more than ever. Am J Public Health. 2020;110(9):1360–1361. 
49. Holzberg J. Assessing the feasibility of asking about gender identity in the Current Population Survey: results from focus groups with members of the transgender population. Available at: https://www.census.gov/content/dam/Census/library/working-papers/2018/adrm/rsm2018-05.pdf. Accessed June 28, 2021.
50. Arndt R. Growing recognition of gray areas in gender identity leads to changes in EHRs. Available at: https://www.modernhealthcare.com/article/20180616/NEWS/180619946/growing-recognition-of-gray-areas-in-gender-identity-leads-to-changes-in-ehrs. Accessed June 28, 2021.