JMIR Publications

ABSTRACT

Background:

Historically, the terms sex and gender have been used interchangeably as a binary attribute to describe a person as male or female, even though there is growing recognition that sex and gender are distinct concepts. The lack of sex and gender delineation in electronic health recordsWe conducted an environmental scan to understand how sex and gender are defined and implemented in existing Canadian EHRs and current international health information standards. (EHRs) may be perpetuating inequities experienced by the transgender and nonbinary (TGNB) populations.

Objective:

We conducted an environmental scan to understand how sex and gender are defined and implemented in existing Canadian EHRs and current international health information standards.

Methods:

We examined public information sources on sex and gender definitions in existing Canadian EHRs and international standards communities. Definitions refer to data element names, code systems and value sets in descriptions of EHRs and standards. The study built on an earlier environment scan by Canada Health Infoway, supplemented with sex and gender definitions from international standards communities. For analysis, we summarized and reviewed the definitions for clarity, consistency and accuracy. We also received feedback from a virtual community interested in sex-gender EHR issues.

Results:

The information sources consisted of public website descriptions of 52 databases and 55 data standards from 12 Canadian entities and 10 standards communities. There are wide variations in how sex and gender are defined and implemented in Canadian EHRs and international health information standards. There is lack of clarity in some sex and gender concepts. There is inconsistency in the data element names, code systems and value sets used to represent sex and gender concepts across EHRs. The appropriateness and adequacy of some value options are questioned as our societal understanding of sexual health continues to evolve. Outdated value set options raise concerns about current EHRs supporting the provision of culturally competent, safe and affirmative health care. The limited options available also perpetuate the inequities faced by the TGNB populations. The expanded sex and gender definitions from leading Canadian organizations and international standards communities have also brought implementation challenges in how to migrate these definitions into existing EHRs. We proposed five high-level actions, which are to (1) articulate the need for this work, (2) reach consensus on relevant sex and gender concepts, (3) reach consensus on expanded sex and gender definitions in EHRs, (4) develop a coordinated action plan, and (5) demonstrate the benefits in tangible terms.

Conclusions:

There are wide variations in the data elements, code systems and value sets used to define sex and gender concepts across Canadian EHRs and the health information standards that support them. While there are efforts underway to modernize sex and gender concept definitions, we need decisive and coordinated actions to ensure clarity, consistency and competency in how sex and gender concepts are defined and implemented in EHRs. This work has implications in addressing inequities experienced by the transgender and nonbinary populations in Canada.