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How SO/GI Data Standards Can Boost EHR Documentation, Health Equity

Data standards for sexual orientation and gender identity (SO/GI) EHR documentation could help boost care quality for gender-marginalized patients.

Sexual orientation and gender identity (SO/GI) EHR documentation practices are not uniform across the care continuum due to a lack of data standards. But as the industry pushes for health equity and providers begin to acknowledge gender diversity, it will be critical to determine better documentation strategies.

Ensuring that individuals’ SO/GI information can be accurately documented in the EHR is the first step in supporting health equity for sexual and gender minorities, a group that is vastly underserved and often marginalized in healthcare.

Why Is SO/GI EHR Documentation Important?

Collecting SO/GI data in the EHR is key to providing patient-centered care and addressing the specific healthcare needs of sexual and gender minorities, according to the CDC.

“Without this information, lesbian, gay, bisexual, and transgender (LGBT) patients and their specific healthcare needs cannot be identified, the health disparities they experience cannot be addressed, and important healthcare services may not be delivered,” CDC officials noted.

Such services may include preventive screenings, risk assessment for sexually transmitted diseases and HIV, and behavioral health interventions related to anti-LGBT stigma. 

Since patients’ SO/GI may change over time, it is important for healthcare providers to reassess this information periodically to ensure accurate patient health data.

For some patients, being asked about their sex listed at birth or their sexual orientation may seem irrelevant. On the other hand, asking about SO/GI periodically in the clinical setting may help gender-marginalized patients feel more validated in their identity.

“An opportunity for transgender people to share information about their SO/GI in a welcoming and patient-centered environment opens the door to a more trusting patient–provider relationship,” CDC officials noted.

What Is the Status of Documenting SO/GI?

Many healthcare providers do not routinely discuss SO/GI with patients, and most EHRs cannot accurately process and exchange this information.

A study published in the Journal of the American Medical Informatics Association (JAMIA) revealed that while the literature on gender, sex, and sexual orientation (GSSO) EHR documentation is growing, a lack of standardized data collection stands in the way of a gender-inclusive EHR.

“The absence of precisely defined and inclusive gender, sex, and sexual orientation (GSSO) concepts, terms, and codes has contributed to the invisibility of sexual and gender minorities in health datasets and EHRs that produce them and to widespread inaccuracies in their use in these systems,” the study authors wrote.

The lack of concepts, terms, and codes prevent health professionals from learning more about sexual and gender minority health needs and long-term health outcomes.

Solutions to SO/GI Documentation

Currently, there is no defined solution for SO/GI documentation, but some healthcare informatics experts are determining a best path forward.

For example, leveraging health IT data standards through a gender-inclusive HL7 model for EHR documentation could help improve care delivery for gender-marginalized patients, according to a 2021 study published in JAMIA.

A single recorded administrative sex or gender value is often assumed to be all a clinician needs to understand a patient's clinical sex and gender identity. However, researchers noted that a binary value does not represent the full spectrum of gender and sex.

“The current representation of patient sex and gender information in interoperable clinical systems poses major challenges for organizations intent on improving outcomes for sex- and gender-marginalized people,” they wrote.

The study authors created a conceptual HL7 model for clinical EHR documentation that aims to more accurately record patients’ sex and gender within the EHR in pursuit of health equity for gender-marginalized patients.

The HL7 Gender Harmony Logical Model has five major elements:

  • Gender identity (GI):
  • Sex for clinical use:
  • Recorded sex or gender (RSG):
  • Name to use (NtU)
  • Pronouns

The HL7 community of standards has begun to work with the researchers to incorporate the proposed changes into each of the existing HL7 standards; V2, CDA, and FHIR. Ultimately, the implementation of the health IT data standards will boost care delivery for gender-marginalized patients, the researchers noted.

“When these improvements are implemented based on standards accompanied by certification expectations, exchange of these data between healthcare organizations will improve the patient experience by reducing requirements for data re-entry and improving the reliability of sex and gender information made available to clinicians, enabling quality care relationships for gender-marginalized people from intake,” the researchers concluded.

A JAMIA study published in 2018 highlighted how healthcare organizations can document SO/GI information more accurately through EHR optimization.

Healthcare organizations can work with their EHR vendors to implement SO/GI customizations, such as the creation of structured and discrete data fields for SO/GI questions.

Additional forms, like anatomical inventories, can be built into EHRs for clinical decision support based on a patient’s anatomy rather than on sex assigned at birth or gender identity, the study authors explained.

The researchers emphasized that staff training is key to ensuring culturally competent SO/GI data collection.

“Prior to collecting data, all staff who interface with patients will need to learn to communicate effectively and respectfully with patients about SO/GI data collection, and will also require training in providing affirming care and services for LGBTQ patients, including consistently using patients’ correct names and pronouns,” they wrote.

Training programs can be incorporated into new staff orientation, the study authors suggested. Resistant staff may need additional training.

“To address staff concerns, supervisors may find it helpful to share positive feedback from patients about the program, and/or show data demonstrating LGBTQ disparities in health services and outcomes,” the study authors wrote.  

The study authors noted that organizations should conduct a pilot of the data collection process in one provider’s panel or department to test the system and make improvements on a smaller scale. 

Once the pilot is deemed successful, the organization can begin to expand the process to other locations while continuing to monitor and assess the process. Eventually, SO/GI data collection can be added to all provider panels and clinical departments.

While SO/GI data collection is not widespread across the care continuum, data standards and EHR optimizations could help the industry move towards a more gender-inclusive EHR.  

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