Brigham Research Institute Poster Session Site logo-1
Close this search box.

May Navarra, MPH




Research Staff


Boston Medical Center


General Internal Medicine


May Navarra MPH, Hannah Dumas MPH, Melissa Marquez MBA, Hosanna An, James W Griffith PhD, Carl G Streed Jr MD MPH

Principal Investigator


Patient Perspectives on Sexual Orientation and Gender Identity (SOGI) Data Collection for Electronic Medical Records (EMR)


Introduction: In order to better assess and address the health disparities of lesbian, gay, bisexual, transgender, queer, intersex, and asexual (LGBTQIA+) populations, healthcare institutions need to accurately collect and document sexual orientation and gender identity (SOGI) data. In this qualitative study, we aim to understand perspectives and areas of improvement for SOGI data collection.
Specific Aims: This study aims to (1) identify thematic differences on perspectives of SOGI questions by gender, age, and health literacy and (2) collect feedback on how to improve SOGI data collection.
Methods: We conducted surveys and interviews with 66 adult patients and community members of a safety-net hospital, which included measures of health literacy, SOGI questions about participants’ own identities, and their view on how to formulate the questions as well as the best context for disclosure. A team of four coders used Dedoose software to code transcripts and analyze recurring themes.
Results: Five major themes arose from the cognitive interviews. (1) Transparency on the purpose of SOGI data collection (2) context of SOGI data collection (3) avoiding disclosure for fear of discrimination (4) seeking disclosure for affirmation and medical accuracy and (5) allyship among participants who are not sexual or gender minorities (SGM). Participants gave specific feedback on how to improve gender identity data collection, such as, (1) separate ‘genderqueer,’ ‘nonbinary,’ and ‘gender non-conforming’ into three distinct options, (2) avoid othering binary trans people because listing “trans man/woman” and “man/woman” implies that the default for “man/woman” is cisgender and (3) clarify questions by defining SOGI terms.
Conclusion: This study showcases current deficiencies and barriers to collecting accurate and affirming SOGI data in EMRs. Identified themes represent community sourced feedback that can inform future development and use of SOGI data collection.

Research Context

This study directly assesses patient perspectives on how their sexual orientation and gender identity are collected for electronic medical records. This work is pertinent to women’s health research because current SOGI data collection assumes that sexual orientation can describe how the patient structures their sexual and romantic relationships and uses gender to assume what body parts the patient has. This approach not only dismisses the nuance of gender and sexuality, but it is also inaccurate for the data is it trying to capture. Additionally, it is important to affirm transgender women’s identities as women in the medical institution because this population is at risk for poor health outcomes and they historically avoid seeking care out of fear of discrimination.