Collecting Sexual Orientation and Gender Identity Information: Filling the Gaps in Sexual and Gender Minority Health

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There are millions of sexual and gender minority (SGM) individuals living in the United States, where an estimated 2.7% identify as lesbian, gay, or bisexual,1 and 0.6% identify as transgender.2,3 Despite these numbers, a lack of sexual orientation and gender identity (SOGI) data collection limits our understanding of the true size of and health outcomes among these populations.
The limited evidence that exists, primarily from small studies that have proactively collected SOGI information, has revealed substantial health disparities among SGMs. These findings are bolstered by an increasing number of nationally representative surveys that collect SOGI information. Sexual minorities suffer from poorer physical, mental, and functional health, whose manifestations include increased rates of chronic obstructive pulmonary disease, depression, and activity limitations.4,5 They also have higher rates of health risk factors. Both sexual minority men and women are more likely to smoke, and sexual minority women are more likely to binge drink and be obese.4–6 Sexual orientation is also a modifier for primary care utilization and is negatively associated with rates of cervical cancer screening in sexual minority women and prostate cancer screening in sexual minority men.7,8 Research on gender minorities predominantly has focused on and demonstrated disparate health outcomes in mental health, sexually transmitted infections including Human Immunodeficiency Virus, substance use, and physical health. For transgender individuals, stigma and discrimination also contribute to disparities in health, access to care, and socioeconomic status.9
These findings underscore and reflect a growing recognition of SGMs as distinct populations with specific health care needs. The National Academy of Medicine—formerly called the Institute of Medicine—issued a report in 2011 calling attention to the paucity of existing health research on SGMs and the need for robust data collection efforts.10 The United States Department of Health and Human Services’ Office of Disease Prevention and Health Promotion’s Healthy People 2020 echoes the same awareness by setting SGM health objectives, including SOGI data collection in national health surveys.11 The National Institute of Minority Health and Health Disparities has also designated SGMs as a health disparity population for research.12
Routine SOGI data collection, as recommended by multiple national organizations, will enable clinicians, researchers, and policymakers to better identify, understand, and address disparities in SGM health. However, those who seek to collect SOGI data will likely encounter 2 important questions: first, is SOGI data collection acceptable to patients and second, how should these data be collected? A number of qualitative and quantitative studies have broadly shown that patients have high levels of acceptability regarding collection of SOGI information. In emergency department settings, only 10% of patients reported that they would be offended by or refuse to answer questions regarding sexual orientation. There was no significant difference among gay, lesbian, and straight individuals in refusing to answer. In contrast to patient perceptions, ∼80% of clinical providers including nurses and physicians believed that patients would be offended by or refuse to answer questions regarding sexual orientation.13 Compared with the emergency department, patient acceptability of SOGI data collection may be even higher in primary care settings. In another study, only 8% of patients indicated that would refuse to answer SOGI questions during the intake process.14 This modest difference might be secondary to perceived relevance; patients may be more likely to view SOGI data collection as important in primary care, rather than emergency care.2,15 Patients might also prefer disclosing to providers with whom they have, or will develop, a longitudinal relationship.
Outside of clinical settings, a study using national health survey data found that <2% of both veterans and nonveterans would refuse answering SOGI questions.
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