This appeared late last week.
Researchers Create Gender-Inclusive HL7 Model, EHR Documentation
Researchers, including ONC Deputy National Coordinator Steven Posnack, have created an HL7 model for gender-inclusive clinical EHR documentation.
October 08, 2021 - Leveraging health IT data standards through a gender-inclusive HL7 model for EHR documentation could help improve care delivery for gender-marginalized patients and boost health equity, according to a new study published in JAMIA.
A single recorded administrative sex or gender value is often assumed to be all a clinician needs to understand a patient's clinical sex and gender identity. However, researchers noted that a binary value does not represent the full spectrum of gender and sex.
“The current representation of patient sex and gender information in interoperable clinical systems poses major challenges for organizations intent on improving outcomes for sex- and gender-marginalized people,” they wrote.
The study authors created a conceptual HL7 model for clinical EHR documentation that aims to more accurately record patients’ sex and gender within the EHR in pursuit of health equity for gender-marginalized patients.
The HL7 Gender Harmony Logical Model has five major elements: gender identity (GI), sex for clinical use, recorded sex or gender (RSG), name to use (NtU), and pronouns.
The researchers explained that GI is an individual's personal sense of being a man, woman, boy, girl, or something else. The model states that GI is something that is determined by the individual themselves and cannot be assigned.
The RSG element is used to identify sex values or gender values that are specified administrative documents such as identity cards or insurance cards. By characterizing these sex or gender values as “recorded” and documenting the context of use, EHR systems avoid repurposing administrative sex and gender data for clinical care.
More here:
https://ehrintelligence.com/news/researchers-create-gender-inclusive-hl7-model-ehr-documentation
There is further coverage of the same issue.
Beyond 'male, female, unknown' – informaticists propose gender-inclusive HL7 model
Researchers, including ONC Deputy National Coordinator Steven Posnack, noted that existing sex and gender data collection practices do not meaningfully reflect patient identity and diversity.
By Kat Jercich
October 07, 2021 12:24 PM
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.
- Pronouns.
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.
Again lots more here:
What struck me about all this was the list of the various harms the people affected by the boy / girl / other paradigm were victims of and just how invisible to problem is until, unless you are affected, the it is pointed out!
It seems it has taken a good while for the problem to be clarified and seemingly for now, addressed!
I wonder will this approach be as enduring as the previous one was or will we be pushed, by societal change etc., to move again in the future.
Will be interesting to see how programmers make to data capture work to provide both the choice and quick data entry for those who are comfortable with the old way of doing things!
Glad the guys and gals at HL7 are doing the hard thinking!
David.
3 comments:
Interesting but the devil is always in the detail (and exceptions).
Can the model cope with the phenomenon known as human chimera?
It's Possible For a Person to Have Two Different Sets of DNA - Here's How It Happens
https://www.sciencealert.com/it-s-possible-for-one-person-to-have-two-different-sets-of-dna-here-s-how-it-happens
Under some circumstances different parts of a body can have a different sex.
The documentation says that Sex for Clinical Use (SFCU) can have one of four values
Female
The “female” values apply to this patient, in the case of a given procedure or process in a given context.
Male
The “male” values apply to this patient, in the case of a given procedure or process in a given context.
Specified
This patient has specific documented characteristics that do not fully match either male or female in a given context.
Unknown
There are insufficient observations to determine a meaningful SFCU. For example, an emergency trauma case may require treatment before SFCU can be established.
Human chimera does not seem to fit into any of these.
The patient is neither completely male or female. The term Unknown might apply, but it might not, if it has been established that the patient has both male and female DNA
Specified does not apply because the patient could have specific documented characteristics that match, in different parts, both male and female in a given context.
Rare, but not unknown. Which rather describes many different medical conditions and combinations of conditions.
"Glad the guys and gals at HL7 are doing the hard thinking!" - well done for finishing this way after dealing with this particular subject ;-)
Indeed, 'specified' does very definitely include chimera and that was very specifically discussed. The details are found in the documented characteristics, since chimera have no established pattern.
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