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Sexual Orientation and Gender Identity in Medical Records Can Reduce Disparities

By Jenna Becker

Sexual orientation and gender identity (SOGI) data is widely considered crucial to providing competent care to LGBTQ+ patients. This data can also be used to reduce health disparities among sexual and gender minority populations.

Most electronic health record (EHR) vendors are able to document SOGI data. Many health care systems across the country have been collecting SOGI information for several years. However, SOGI documentation is not broadly required. It’s time to require SOGI data collection in EHRs nationwide.

The importance of collecting SOGI data

The collection of SOGI data in health care settings can help improve culturally-sensitive care and reduce health disparities.

SOGI data can allow for more patient-centered care. Information about a patient’s sexual orientation, the CDC notes, can assist with “assessments of risk for sexually transmitted diseases and HIV, discussions about parenting, and effective interventions for behavioral health concerns that can be related to the experiences of anti-LGBT stigma.”

Gender identity data is especially critical for the care of gender minority patients. Documenting gender identity and preferred pronouns can help providers avoid misgendering patients, which causes significant harm. Gender-affirming hormone therapy can also impact a patient’s laboratory results, so gender identity information can help identify a patient’s appropriate laboratory reference range. This data also helps identify appropriate preventive screenings for patients. 

Further, the collection of SOGI data allows health care organizations and researchers to identify and address health disparities among sexual and gender minority populations.

A recent paper from Fenway Health argued that the COVID-19 crisis has only escalated the need for SOGI data collection. The paper states that sexual and gender minority populations are at higher risk for contracting and becoming seriously ill from COVID-19, in part because they are more likely to work in industries that have been hardest hit by the pandemic. Health disparities among sexual and gender minority patients put them at higher risk of developing complications from COVID-19. However, few states report SOGI information during COVID-19 testing. We don’t know whether or to what extent COVID-19 is disproportionately impacting the LGBTQ+ community.

Requiring SOGI data collection

In 2015, the Office of the National Coordinator for Health Information Technology (ONC) issued a final rule requiring that EHRs must have the capacity to record SOGI data. ONC even established data standards for collecting SOGI data. However, neither ONC nor CMS requires health care organizations to to actually collect this data. The Health Resources and Services Administration (HRSA) requires SOGI data collection, but only from federally-qualified health centers.

SOGI data collection should be mandated for all health care organizations. This could be required through an existing framework, like CMS and ONC’s Promoting Interoperability program. ONC and CMS have already used Promoting Interoperability to promote specific health IT objectives. Regardless of the specific framework used, ONC and CMS should mandate SOGI data collection.

Finally, we should also consider other data that will improve care for sexual and gender minority individuals. For example, tracking a patient’s organ inventory could significantly improve care for gender minority patients. EHRs could target, say, pap smear reminders to only patients with a cervix. SOGI data can certainly extend beyond demographic information. Although EHRs may not yet support collecting such data, we should stay forward-looking when considering SOGI data requirements.

Collecting SOGI data will not improve care on its own. Patients may not be comfortable sharing this information with their providers, based on discrimination they face in the health care system and privacy concerns. Health care organizations must properly train their employees to collect this data sensitively. However, mandating SOGI data collection is an important first step to providing culturally-competent care and addressing health disparities among sexual and gender minority populations.

Jenna Becker

Jenna Becker is a 2L at Harvard Law School with a background in healthcare software.

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