How Sex/Gender EHR Interoperability Can Drive Population Health

Interoperability of sex/gender EHR elements could help support research to improve population health, according to a study published in JAMIA.

Researchers examined recommendations from the National Academies of Sciences, Engineering, and Medicine (NASEM) report “Measuring Sex, Gender Identity, and Sexual Orientation” and the Health Level 7 (HL7) Gender Harmony Project (GHP) product brief “Gender Harmony—Modeling Sex and Gender Representation, Release 1.”

“Both the HL7 GHP and the NASEM report agree on several fundamental principles: sex and gender are complex, multidimensional constructs that are essential for improving health at both the individual and population levels,” the researchers wrote.

“In particular, these constructs can help provide better care for transgender and cisgender patients and populations, and they can serve as a bridge between public health and healthcare settings, allowing for disparities and inequities to be identified at the broader population level and addressed at the individual patient level,” they added.

While both publications agree on core approaches for the measurement of sex- and gender-related constructs, the study authors noted that additional clarification could help improve the ability to address health inequities.

For instance, interoperability between sex/gender data elements in EHRs and those collected for public health surveillance could advance the use of preventive services, improve public health, and support population health research.

Stakeholders collect sex/ gender data in a piecemeal fashion across the country. Improved practices around standardized sex/gender data collection in electronic case reporting, syndromic surveillance, and public health registries could help reveal trends and disparities by sex/gender.

Additionally, the study authors noted that the HL7 GHP and the NASEM report struggle with significant unknowns in the sex/gender data collection space.

Each report approaches the current state by acknowledging its usage of proxies for other data. For example, HL7-SFCU, the GHP element for “sex for clinical use,” may be a proxy for organ size or hormone levels in one situation and a general proxy for an unknown or as-yet uncharacterized entity.

While the NASEM report does not address these conditions directly, it notes that “[i]t is important not to use any one [sex/gender-related datum] as a proxy for any other one.”

“Thorough reexamination of unknown or as-yet uncharacterized entities in relationship to sex-specific reference values and moving away from using proxies could promote the highest standard of care,” the researchers suggested.

Further, the GHP element for gender identity (HL7-GI) notes that jurisdictions may add options relevant to their specific sociocultural context, naming TwoSpirit, Mahu, and Palao’ana.

However, it is unknown how appropriate such data collection is or how accurate it would be in a given jurisdiction.

For instance, several gender-related terms used by groups of American Indians may make sense as different options in one region but not another.

“Additionally, certain terms may be conceptually broader than gender identity, such as Two-Spirit, which may make having a separate question to ascertain identity status more feasible,” the researchers said.  

“Importantly, while HL7-GI and HL7-RSG allow for values in addition to the minimum required value set, the process by which to add or implement such additional values has not been clarified, and issues remain in relationship to how jurisdictions would communicate such information,” they added.