Recommendations and Implementation Considerations for the Routine Collection of Sexual Orientation and Gender Identity Data in Research and Practice

During the COVID-19 pandemic, the US Census Bureau began releasing the Household Pulse Survey to collect data on the social and economic effects of COVID-19 in the country.¹ This survey collected data on sexual orientation and gender identity (SOGI), providing valuable data to understand and address the needs of individuals who identify as sexual and gender minorities (SGMs).² However, the survey did not include specific SGM labels beyond the terms gay, lesbian, bisexual, and transgender, limiting its ability to fully capture the diversity of SGM experiences and identities within the United States.¹

The absence of comprehensive SOGI information has hindered the identification of health disparities and the development of targeted interventions.³ While some data collection efforts, such as the Household Pulse Survey, have begun to shed light on the prevalence of certain SGM identities, these initiatives often fall short of capturing the full spectrum of SOGI diversity. Because SGM identities are mobile, meaning that they have the potential to evolve across the life course, regular SOGI measurement is necessary to capture the accurate identity of a patient or research participant.^4–6 This practice will avoid misinterpretation of research findings, inadequate health care provision, and perpetuation of health disparities among SGM individuals.^3,7

SELF-IDENTIFICATION

“Coming out” is a process in which people who identify as an SGM acknowledge and accept their own SOGI and make their identity public.⁸ This process often includes four dimensions: self-identification with an SGM identity, exploration of the identity, making the identity public, and becoming comfortable and confident in the identity.⁹ How and when coming out takes place is based on a number of factors, including potential violent backlash and internal and external stigma, as well as managing and navigating societal expectations.^8,9 The journey is unique to each individual.

Though it might seem that coming out is a binary state of being, the process is much more fluid. A person who identifies as an SGM is not either “in” or “out”; it is likely that there are unique levels of “outness.” The process is an ongoing management of a complex identity.⁸ Based on safety, acceptance, support, and myriad other factors, an individual could choose to come out early or later in life. They could also choose to disclose their identity to a defined confidant or group of confidants rather than the public at large.⁸

Coming out could change how SGM individuals are identified in a health record. For example, a person who identifies as straight could come out as gay between appointments with their primary care provider. In a research study, a person who identifies as cisgender when they are recruited into the study could come out as transgender between baseline measurements and follow-up points. Without measurement at a future appointment, the SOGIs of these individuals will be incorrectly documented.

SEXUAL ORIENTATION AND GENDER IDENTITY MOBILITY

An individual’s SOGI at one point in time does not imply that the identity is permanent.^4,5,10 Sexuality is often fluid and can change over time.^5,11,12 Gender identity can also evolve.¹² Because SOGI data are often only collected at a single time-point, changes in identities might not get captured. This can lead to incorrect interpretation of research findings, inaccurate conclusions, and a failure to address the disparities and discrimination that these marginalized populations often face.⁷

Research participants of all age groups could self-identify differently at the end of a research study than they did at enrollment, making it imperative for SOGI data to be collected routinely and comprehensively, particularly in longitudinal studies where repeated measurements often occur over extended periods of time. Researchers must understand how intersectionality can affect health outcomes. Racial and ethnic minority individuals who self-identify as SGM face exacerbated health disparities because of the complex interplay of their identities. For instance, studies have shown that lesbian and bisexual women experience higher rates of poor mental health compared with heterosexual women. Lesbian and bisexual women who also belong to ethnic minority groups experience increased stress levels, which can be attributed to the intersection of their identities within multiple marginalized communities.¹³ Without collecting SOGI information, health care providers may overlook the unique mental health needs of this demographic and fail to provide targeted support and interventions.

In health care, infrequent collection of SOGI data could lead to health complications, an increase in health disparities, and further stigmatization.^3,7 A patient could be at different risk of diseases and conditions based on their SOGI at different clinical visits, making the accurate recording of patient SOGI necessary for proper treatment and referral.^7,14,15 For example, there is evidence that transgender women who receive hormone treatment are at increased risk of breast cancer.¹⁶ If a provider does not collect SOGI information and incorrectly identifies transgender women, it is possible that those patients do not get referred to necessary care to manage their breast cancer risk. Health care providers must be informed on SGM health issues so that they have an understanding of the need for SOGI data collection.¹⁷

SEXUAL AND GENDER MINORITIES IN HEALTH CARE

Previous reports have shown that lesbian women and gay men experience health disparities and barriers to accessing health care.¹⁴ Compared with heterosexual women, lesbian and bisexual women have 1.47 times the odds of disability, 1.40 times the odds of poor mental health, 1.42 times the odds of obesity, and 1.37 times the odds for cardiovascular disease. Similarly, gay and bisexual men are at increased risk compared with heterosexual men, having 1.26 times the odds for disability, 1.38 times the odds for poor physical health, and 1.77 times the odds for poor mental health.¹⁴

Transgender individuals also experience health disparities.¹⁵ When compared with cisgender individuals, transgender individuals have a higher likelihood of generalized anxiety, social anxiety, depression, psychological distress, and eating concerns as measured by the Counseling Center Assessment of Psychological Symptoms-34 scale.¹⁵

Health disparities are also present among SGM youths.^18,19 SGM high-school students experience more substance use, bullying, poor mental health, and suicidal ideation than their non-SGM counterparts.¹⁹ In addition, adolescent and young adult SGM cancer survivors have been shown to have increased odds of depression and anxiety when compared with heterosexual and cisgender cancer survivors.¹⁸

SGMs also experience disparities in health care access and utilization.²⁰ There are extensive barriers to care for SGMs, including insurance coverage and provider discrimination.²⁰ Lack of provider knowledge on SGM health issues can also prevent SGM health care utilization.²¹ Providers who do not have knowledge of SGM health can often place the burden of knowledge on the patient, creating a situation in which the patient must educate the provider on their unique health care needs.²¹ Transgender participants in a qualitative study discussed having to educate their providers on transgender health issues in screening for sexually transmitted infections, noting that they were more likely to stay with a provider if they were willing to listen and learn.²¹ Likewise, SGM patients who experience a situation in which a provider does not listen to their unique health care needs could be dissuaded from utilizing care in the future. SOGI-based discrimination can also be a reason for SGMs to delay treatment.^20,22 At the policy level, states can have different policies regarding gender-affirming health care, meaning that these treatments could be inadequate, biased, or not covered by insurance.^20,23 This delineation creates situations in which access to health care differs by state.²³ Implementing SOGI data collection must account for these barriers and recognize that because of them, SGM individuals might be unwilling to disclose their identities.

The collection of SOGI data at clinical visits is key for addressing health disparities and referring SGM patients to appropriate health services.⁷ Patient acceptability for answering SOGI questions is high, though provider discomfort in asking SOGI questions is often cited as a reason for not collecting such data.^24,25 If SOGI data are not collected, and health care providers are thus not aware of a patient’s SOGI, they may not have a full understanding of the patient’s health needs. This can lead to inadequate or biased care. For instance, specific subgroups within the SGM population, such as gay men, men who have sex with men, and transgender women, face higher risk of HIV infection than the general population. It is possible that individuals identifying with these groups may choose to disclose their SOGI information because of HIV-related concerns, which could benefit significantly from open discussions with their health care provider. If a patient’s SOGI information is not collected during these encounters, there is a risk that these critical conversations may be entirely overlooked. Consequently, essential preventive care, such as preexposure prophylaxis, may remain underutilized, potentially compromising the overall health and well-being of these already vulnerable groups.^3,7 A similar scenario is possible with certain types of cancers disproportionately affecting specific SGM groups, for whom early detection can be crucial for timely and effective treatment.^26,27 This includes increased risk of breast cancer for transgender women who use hormone therapy and virus-related cancers (penile and anal cancer) for gay and bisexual men.^16,26 Disclosing such critical information empowers patients to equip their health care providers with the necessary information required to deliver optimal care.⁷

Omitting SOGI data in clinical settings or health research efforts creates an invisible population of people and allows health disparities to go unaddressed.^3,7 With adequate SOGI data collection, SGM populations have pathways toward health care that can work to eliminate SGM health disparities, improving research and policy decisions that impact the overall well-being of these vulnerable groups.⁷

IMPLEMENTATION CONSIDERATIONS

It is vital to recognize the potential dangers faced by SGM individuals when discussing their identities. SGMs are 8.3 times more likely to experience violent hate crimes compared with their heterosexual and cisgender counterparts.²⁸ Acts of violence and victimization are strongly linked to past suicide attempts, suicide planning, and suicidal ideation within SGM groups.²⁹ Asking SGM individuals to disclose their SOGI can expose them to significant risk, especially when they actively conceal their identity because of perceived unsafe environments. The risk associated with SOGI disclosure must be central to any discussion concerning SOGI data collection. Researchers and health care providers bear a responsibility to understand the risks faced by SGM individuals when disclosing their SOGI. Their concern is particularly pronounced in health care settings, where revealing an individual’s SOGI to a provider may inadvertently compel an SGM patient to disclose their identity to their families. In cases where families are unsupportive of SGM identities, this disclosure could potentially lead to violence, psychological and emotional abuse, or homelessness for the SGM individual. Failing to consider the potential harm associated with SOGI data collection may exacerbate health disparities and violence within SGM communities.

Multilevel approaches must be taken to implement SOGI data collection. The practice must go beyond only asking SOGI questions and move to create safe, welcoming, and inclusive environments for SGMs so that they feel comfortable providing their information. Clinical settings must include practices throughout the organization that are inclusive and affirming to SGMs. These include asking patients for their preferred names and pronouns, maintaining nongendered bathrooms, updating electronic health records to be inclusive of SGM identities, and ensuring that all providers and staff have completed SGM competency training.^3,30,31 It is important that patients are informed about why they are being asked SOGI questions at multiple appointments. Without explanation, patients could think that previous SOGI information was disregarded or incorrectly recorded. Patient-centered strategies can be used to mitigate any misunderstandings or assumptions, ensuring patients feel heard, valued, and actively engaged in their own health care.³²

Implementation of this practice in health care settings is a commendable goal, but it is not without its inherent challenges. In addition to the need to change the culture of health care settings broadly, routine SOGI data collection requires effective education and advocacy efforts targeted at health care personnel. Not only must providers recognize the importance of SOGI data collection, but they must also believe that it warrants inclusion within their limited time appointments.²⁵ This is a challenge when time is a barrier for any new guideline providers are asked to implement. Previous research on SOGI data collection suggests that providers feel discomfort asking SOGI questions and largely believe that they will inadvertently offend patients.²⁵ Addressing this discomfort through robust cultural competency training is essential. Provider support alone is not sufficient to facilitate SOGI data collection. Though the integration of SOGI data into electronic health records systems is a critical step, it introduces new confidentiality challenges. It is possible that SGM patients may only wish to disclose their SOGI to their providers while keeping this information confidential from others. Building and maintaining trust between providers and patients is crucial to ensuring the confidentiality of this sensitive information, as revealing an individual’s SOGI could potentially lead to violence and harassment.

Patient intake forms are a comfortable format for patients to input their SOGI data, which would include a nonverbal and open-ended response option.³² This model would give patients the option to disclose their SOGI and then prompt an open discussion with their provider on relevant prevention methods for their unique identities.

Researchers must engage the SGM community in every stage of the research process, ensuring community buy-in to the work.³³ Ultimately, the societal-level policies should recognize the violence and discrimination that SGMs experience and work toward protecting the community. Policy changes require thoughtful and deliberate advocacy from people and communities across the United States.³⁴

Frequency of SOGI data collection is dependent on the individual clinical appointment schedule for patients and the schedule of research projects for study participants. For example, some recommend adults aged 50 years and older see a primary care doctor every year whereas for people aged younger than 50 years visits are recommended as little as every three years.³⁵ Specialized care often requires more frequent appointments. In research settings, participant follow-up could vary from months to years depending on the scope and topic of the study. A good practice could be to collect SOGI data if the appointment or follow-up point occurs more than six months after the last SOGI measurement, but this would require standardization and data-sharing across organizational settings.³⁶ There is a need for research specifically into the implementation of SOGI data collection with measurement frequency being an area in need of evidence.

It is crucial that SOGI data collection is held to the same standards across different settings.³⁶ The National Institutes of Health Sexual and Gender Minority Research Office³⁷ and the White House Office of the Chief Statistician of the United States³⁸ have resources available to strengthen SOGI data collection. There is a need for stronger coordination across federal agencies in this area and implementation of their recommendations in real-world settings. A national commission for SOGI data collection would provide standards, recommendations for best practices, and guidance on the frequency and method of data collection.³²

CONCLUSIONS

While relevant steps have been taken to emphasize the importance of collecting and analyzing SOGI data to improve health outcomes among SGM populations, it is imperative to keep moving the needle forward by insisting that scientists and clinicians implement systematic and routine SOGI data collection as a regular practice in research and health care.^7,24 This will promote the expansion of evidence that will help in the development of interventions and programs that are inclusive of the diverse needs of SGM groups.⁷

POSTPUBLICATION UPDATE

February 11, 2025: Since initial publication, author Millett changed their name. The byline and citation have been updated to reflect this change.