JAMIA: Gender Harmony Project Seeks to Accurately Capture Sex and Gender Concepts

Oct. 13, 2021
The Journal of the American Medical Informatics Association recently published an article addressing the need for accurate representation of clinical sex and gender identity in clinical systems, suggesting improved data collection

The Journal of the American Medical Informatics Association (JAMIA), published an article on Oct. 6 entitled, “Gender harmony: improved standards to support affirmative care of gender-marginalized people through inclusive gender and sex representation.”

The authors explain that accurate representation of clinical sex and gender identity in interoperable clinical systems is often a major challenge for organizations—especially those that want to improve outcomes for sex- and gender-marginalized people. The authors state that improved data collection has been held back by the historical approach that a single, usually binary, datum was enough. Their solution is the Gender Harmony Project (GHP), that includes the Gender Harmony model.

The authors explain that “The GHP was born in May of 2019 from the ongoing frustrations that sex and gender concepts are not accurately captured within existing health models and standards, impacting the quality of care for sex- and gender-marginalized people and other people, resulting in health inequities. It is a collective, collaborative, international effort to help fulfill healthcare’s responsibility to gender-marginalized people by specifying gender-inclusive standards that can be used by systems and clinicians in the provision of affirmative and quality person-centered care. The primary output of the GHP to date is the HL7 Gender Harmony Logical Model.”

The authors state that “The Model is a conceptual model that outlines the data elements, values sets, element attributes, and relationships that clarify the meaning and context of the information presented to guide and inform changes within operational standards. The Model has five major elements independent of other components that may also be part of the information model for a person: Gender Identity, Sex For Clinical Use, Recorded Sex or Gender (RSG), Name to Use (NtU), and Pronouns.”

The model is intentionally abstract, the authors add. “Data elements and attributes need to be mapped to the data classes specified in existing standards such as FHIR and DICOM to be adopted,” they write. “Existing standards have patient information models that provide some, but not all, of these data elements.”

The efforts that are currently underway to update these standards include

  • Mapping between the information models where both provide equivalent elements
  • Adding elements where the existing standard lacks an equivalent element
  • Reconciling and partially mapping similar (but not equivalent) elements between this model and the standards provide elements

The authors write that “Consistency is required for interoperability but has been hampered by a lack of a standard model that can be widely adopted and that outlines common definitions, structure, and terminology. Despite this barrier, some clinical systems vendors and health organizations have independently crafted system-specific changes that support better sex and gender data collection. While admirable, a standard model for the creation of data and exchange standards defined within standards development organizations (SDO) specifications is required for consistency and wide adoption. Relying on market innovation to drive widespread harmonized adoption is insufficient. Software developers may still need incentives to adopt model standards through policy, program, and/or regulatory changes. This process will require iterative improvements and ongoing maintenance. The healthcare community must be engaged and open to incremental improvement.”

“It will be important for SDOs to stay informed about the needs of gender-marginalized people and to engage with the community to best understand how to improve,” the authors write. “Logical Observation Identifiers Names and Codes (LOINC) is seeking input into any new requests that are needed to align with finalized sex and gender observations and data elements. The National Council for Prescription Drug Programs (NCPDP) has begun incremental improvements in SCRIPT ERx to support sex and gender representation where necessary. DICOM has been participating in the GHP and has an active change proposal, CP1927, for modifications to extend DICOM to be consistent with the Model. Health terminology standards are essential to the exchange of accurate and meaningful sex and gender information in a manner consistent with the Model.”

The authors also explain that the HL7 community of standards has begun to work with the members of GHP to incorporate the proposed changes to each of the existing HL7 standards: V2, CDA, and FHIR.

The authors conclude that “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.”

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