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Beyond Binary: Expanding LGBTQ+ Clinical Data

By Ebonie Megibow, MPH
June 21, 2023

Collecting timely sexual orientation and gender identity data is essential to identify and address health inequities for LGBTQ+ people.

A rainbow pride flag collage with many portraits of diverse LGBTQ+ people

The number of individuals who self-identify as LGBTQ+1 is on the rise.2 However, increasing visibility of LBGTQ+ populations has not yielded increasingly equitable health care access and outcomes. This is evidenced by mounting anti-LGBTQ+ legislation, including state legislation restricting access to gender-affirming care for minors and adults

In 2016, the National Institute on Minority Health and Health Disparities officially classified sexual and gender minorities3 as a health disparity population for National Institutes of Health research. People who identify as LGBTQ+ have reported higher instances of being in fair or poor health compared to their non-LGBTQ+ counterparts.4 Research from the AAMC Center for Health Justice has demonstrated that more than half (51%) of LGBTQ+ birthing people reported that the quality of their experiences with pregnancy, birth, and postpartum care were impacted by bias or discrimination. 

Opportunities for Inclusive Care

Clinic and hospital settings provide an important point of interface for LGBTQ+ populations. Intake, screening, and consultations allow for more robust conversations about social factors that affect health and how they intersect with sexual orientation and gender identity (SOGI). However, clinical and administrative staff may not be equipped to collect accurate SOGI data due to limitations in training and understanding of the complexities of SOGI.

Electronic Health Records and the Power of Data Collection 

Moreover, many electronic health record systems are limited in their ability to capture SOGI data, often using gender binaries and/or nonstandardized free-text fields to record respondents’ sexual orientation. Due to these limitations, the existing data for SOGI health inequities are collected after a patient receives care in the form of patient experience or population-level surveys. Real-time data collection would provide a crucial opportunity for interventions that can change patient outcomes. For example, data from the Fenway Institute have shown that the use of billing codes to gather data about LGBTQ+ patients can improve the quality of their care.

Data Collection Is Vital for Health Equity

It is imperative that clinicians, policymakers, researchers, and collaborators continue to advocate for and implement consistent and complete SOGI data collection standards. Incomplete data collection has far-reaching consequences for policy and practice. When marginalized populations are not counted, they are erased. Accurate data collection is an essential step in understanding the scale of health inequities that LGBTQ+ individuals are experiencing and the foundation on which equitable policies are created.

1Including lesbian, gay, bisexual, transgender, queer, asexual, and other sexual and gender minorities.
3Sexual and gender minorities encompass lesbian, gay, bisexual, and transgender populations, as well as those whose sexual orientation, gender identity and expressions, or reproductive development varies from traditional, societal, cultural, or physiological norms.