HL7 Informative Document: Gender Harmony - Modeling Sex and Gender Representation, Release 1

DESCRIPTION

Health care is increasingly turning to technology to help improve systems and processes to benefit patients and their health. Ongoing efforts supported by governing agencies and standards committees are responding to the demonstrated need through standards that allow for seamless integration of patient information between systems.

It is imperative that both sex and gender vocabulary be formally integrated into clinical care because they are not interchangeable. Both influence health outcomes. Gender-marginalized individuals face significant barriers to adequate and culturally responsive healthcare, leading to numerous health disparities. By adopting structured data sets, agnostic systems will be better equipped to transmit (share) and accept data elements that will improve the accuracy of patient information. Furthermore, standardizing data enables information to be combined with other data sources used to evaluate clinical outcomes. While data collection and documentation are critical factors in clinical decision-making, these new data will also promote important dialogue between clinicians and patients. Ultimately, this will assist with improved quality of care, reduced clinician burden and less fragmentation of a person’s clinical record.

Currently, it is common that a single data element is used to capture both sex and gender information, often assuming these two items are one unified idea. This specification challenges that notion and proposes that independent consideration of sex and gender, and the assessment of their differences promotes the health of women, men, and people of diverse gender identities of all ages, avoiding systematic errors that generate results with a low validity (if any) in clinical studies. The Gender Harmony model describes an approach that can improve data accuracy for sex and gender information in health care systems.

ALTERNATIVE NAMES

HL7 Informative Document: Gender Harmony - Modeling Sex and Gender Representation, Release 1 may also go by the following names or acronyms:

BENEFITS

• Describes an approach that can improve data accuracy for sex and gender information in health care systems
• Proposes independent consideration of sex and gender

DEVELOPMENT BACKGROUND

The consultative process that has produced this HL7 informative specification reflects clinical end user needs on balance with contributors from 2SLGBTQIA+ organizations such as Fenway Health and active participants with lived experience from the United States and Canada. Vendors were included from Japan, Germany, India, and the United States.

The Gender Harmony model essentially outlines a series of specific “context of use definitions” of sex and gender types and outlines required information for each potential use-based collection of specified sex and or gender codes. The sex and gender types we have included illustrate how sex-gender codes, when captured in a prescribed context, clarify the capture of patient clinical information. Some of the noted contexts of use may represent single or multiple information sources such as chromosomal allosomes, genotype, hormone levels, secondary sex characteristics, desired perception, surgical status or planned outcome, organ function, etc. It is clear that a single patient may have multiple different codes properly represent them when capturing multiple sex-gender types.

RELATED DOCUMENTS

HL7 Informative Document: Gender Harmony - Modeling Sex and Gender Representation, Release 1

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TOPIC

• Terminology

BALLOT TYPES

• Informative

STATUS DATE

2024-12-12

RESPONSIBLE WORK GROUP

PRODUCT TYPES

• Document
• White Paper

STAKEHOLDERS

• Clinical and Public Health Laboratories
• Clinical Decision Support Systems Vendors
• EHR, PHR Vendors
• Equipment Vendors
• Health Care IT Vendors
• Healthcare Institutions
• HIS Vendors
• Lab Vendors
• Local and State Departments of Health
• Medical Imaging Service Providers
• Pharmaceutical Vendors
• Quality Reporting Agencies
• Standards Development Organizations (SDOs)

FAMILY

• Cross-paradigm

CURRENT STATE

• Retired

REALM

• Universal