robeastwood-agency
commented
4 years ago Link to HL7 International project page for The Gender Harmony Project; which states
This is project born of the ongoing frustration the ideas encompassed by "sex" and "gender" have never been easy to capture consistently within health models. Those terminologists among us have always said this topic was the quintessential example that proves "terminology is hard." This project is going to try use some tried and true approaches to how we model information (data elements, value sets, code systems) and use them to define/harmonize some aspects, likely not all, for representing sex/gender. This project will result in a balloted informational document that will define use-context collections that also include appropriate value sets. These artifacts can then be associated with model elements using binding parameters that are informed by the metadata the project will identify with each use context.
RichardTON
dbojicic-agency
Prerequisites
The issue / feature
Change description
Provision of support for biological sex of an individual in electronic health information exchange in Agency FHIR and CDA specifications.
Biological sex refers to an individual's chromosomal, gonadal and anatomical characteristics associated with biological sex. An individual's sex is usually described as being either male or female; some individual's may have both male and female characteristics, or neither male nor female characteristics, or other sexual characteristics, e.g. an individual born with both ovarian and testicular tissues, or an individual born with XXY chromosome (other than XY usually associated with male and XX usually associated with female).
Concept "biological sex" is often used to describe sex assigned at birth, which may not necessarily take into account all biological, anatomical, and chromosomal aspects of an individual's biological sex, e.g. an individual can be born with external anatomical characteristics that fall into the typical male or female categories but their internal organs or hormones don’t. For the purpose of supporting sex of an individual in Agency FHIR and CDA specification, sex assigned at birth is not required to be supported.
What it actually enables people to do
A supporting data model would allow recording information about an individual's biological sex, which may be different to their gender, so that consultations with healthcare providers and healthcare can be tailored to suit the individual.
Mockups
None available at this point.
How awesome would it be?
Pretty awesome, this would have significant impact in making clinical decisions, e.g. calculating of medicine dosages and laboratory test ranges by adjusting for an individual's typical hormonal history and anatomy, or can be used for timely health checks such as mammogram, pap smear, prostate exam etc.
Workarounds
None available at this point.
Additional context
This has been raised in HL7 AU github for consideration in the HL7 AU work group, see Represent patient's biological sex #321.
See also Australian Government Guidelines on the Recognition of Sex and Gender.