Beyond 'male, female, unknown' – informaticists propose gender-inclusive HL7 model
Photo: The Gender Spectrum Collection
A team of informatics experts have developed a gender-inclusive Health Level Seven logical model aimed at more inclusive and representative clinical systems.
The model follows more than two years of work by the HL7 Gender Harmony Project, a collaborative international effort to specify standards that can be used by systems and clinicians in the provision of care.
"We have known for two decades that implementing inclusive sex and gender data-collection practices in clinical systems is a critical first step to eliminating data invisibility and addressing health disparities for gender-marginalized people," said the researchers in a paper published in Journal of the American Medical Informatics Association presenting the model.
"But accurate representation of sex and gender diversity in clinical systems and standards is a challenge for many reasons, and adoption has been slow and sporadic," they said.
WHY IT MATTERS
As the experts noted, current representations of patient sex and gender information in interoperable clinical systems pose major challenges for organizations that want to provide person-centered, affirming care.
Such challenges include:
- Lack of common understanding of sex and gender terminology.
- Conflation of administrative and clinical sex- and gender-coding in clinical systems.
- Binary representation of sex and gender.
- Use of "other" and "undifferentiated" values to represent diversity.
- The assumption that gender identity is static.
- The presumption that quality clinical care can be delivered for all individuals based solely on administrative sex or administrative gender.
These issues can have real consequences. One-third of trans people have had at least one negative experience with a healthcare provider, and 23% have reported not seeking care when needed due to fear of mistreatment.
Patient records that do not accurately represent their identities can worsen existing stigma or increase reluctance to pursue medical treatment.
With that in mind, members of the HL7 Gender Harmony Project have been meeting weekly since May 2019 to develop an improved logical model.
"Fundamentally, the model is about providing clinicians the information required to support informed and safe healthcare for every patient based on accurate representation of gender and sex without undue workflow changes," researchers wrote.
The logical model elements include:
- Gender identity.
- Recorded sex or gender, "used to more accurately identify sex values or gender values that are specified in a particular source or documents such as identity cards or insurance cards."
- Sex for clinical use, defined as "a summary sex classification element based on one or more clinical observations such as an organ survey, hormone levels, and chromosomal analysis."
- Name to use.
Each of the elements includes a validity period, which can support multiple of the same element at the same time, as well as a comment attribute that can describe clinical context or complexities.
The researchers note that incremental improvements have already been made. In July 2021, the Office of the National Coordinator for Health IT published the USCDI version 2, which references sexual orientation and gender identity within the patient-demographics data class.
Regarding the proposed model, they explained, "The HL7 community of standards has begun to work with the members of the current [Gender Harmony Project] to incorporate the proposed changes into each of the existing HL7 standards."
"Work has started on applying the Model to the U.S. Core FHIR specification, and discussions with the groups responsible for the FHIR Patient resource have been initiated," they continued.
"Given the rush to move forward, other SDO work may happen in parallel," they added.
Overall, the experts said the improvements will lead to better care.
"The incorporation of expanded sex and gender data in clinical decision support tools and algorithms should enable clinicians to accurately document clinical findings and provide service offerings based on measurable data," they said.
"An educated community of care providers enabled with an improved technical framework that accurately represents diverse sex and gender data will indeed enable better health outcomes."
THE LARGER TREND
Some informatics leaders have been raising concerns for years about the gap between records and lived experiences when it comes to gender-nonconforming patients.
"What's happening is that with a lot of transgender patients, the provider isn't being notified that the patient's due for a procedure, because these systems are not accurately pulling in the correct information," Chris Grasso, associate vice president for informatics and data services at the Fenway Institute, told Healthcare IT News in 2019. Grasso is a member of the Gender Harmony Project and co-authored the paper in JAMIA.
Meanwhile, politicians have zeroed in on trans health and trans identity more broadly as hot-button issues. Under the Trump administration, the U.S. Department of Health and Human Services moved to roll back protections for trans patients.
And although Assistant Secretary of Health Dr. Rachel Levine made history as the first openly trans federal official to be confirmed by the U.S. Senate, she faced claims regarding gender-affirming care for children at her hearing that were not supported by science.
ON THE RECORD
"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," wrote researchers in their JAMIA paper.