Gender Harmony: July 29 meeting notes (HL7 International)

Here are some notes from the July 29 HL7 International Gender Harmony call courtesy of Marcy Antonio


Below is a summary for those of you who weren't able to attend yesterday's meeting. The majority of discussion focused on the Australian legislation (point three) (www.ag.gov.au/Publications/Documents/AustralianGovernmentGuidelinesontheRecognitionofSexandGender/AustralianGovernmentGuidelinesontheRecognitionofSexandGender.pdf) -- this is a particular area that the group is looking for further feedback on to see if this is a possible approach. The other main area where feedback was requested was from the first and second point, in thinking of conditions that may be represented through these use cases in the application of ‘x’.

Rob Horn - long-time HL7 contributor and is a co-chair of sex-gender ad hoc group for DICOM. Much of the discussion was around context – Rob posted 2 comments (tables) under context definitions –scroll to last 2 entries to see tables - confluence.hl7.org/display/VOC/Gender+Harmony+Context+Definitions
Introduced the first three areas for discussion:

1. How sex and gender are used today from an equipment perspective through use cases, with focus mainly on performing imaging procedures.
a. Look at the person to make sure they have the right patient on the table - look at age, sex, weight and height.
b. Picking the right procedure - e.g. determining where to place a X-ray blanket on the organs, what is the right phenotype to use. In this example, it isn’t gender identity that matters, but the phenotype.

2. The use of ‘o’ or ‘x’ in the sex-identity field to alert someone. For example, if you have someone who has undergone hormone therapy, and how does it impact cancer therapy, then you should put 'o'. (This is based on current system limitations and processes developed to get around these limitations)
a. Lab and imaging folks - interested in automating all their defaults. Need a flag so not all things are automatic and alert to when to involve the operator. If they see an 'o' alerts the operator technician to find out what to do and will trigger different approaches that is not in the sex identity field.
b. By simplifying something as sex/gender, to use o, to go look elsewhere. The sex identities are important and are going to have to be addressed through a 'problem list' on additional value options.
c. Cautious to jam the sex identity field that is more accurately represented as a condition, rather than the need to capture a person in transition as a sex identity.


3. Current Australian regulations: www.ag.gov.au/Publications/Documents/AustralianGovernmentGuidelinesontheRecognitionofSexandGender/AustralianGovernmentGuidelinesontheRecognitionofSexandGender.pdf
a. By sex they mean phenotype. Everything to do with social and cultural identity in gender. There shall be three genders M, F, X, where X means not M or F.
b. Privacy requirements in Australia, where they want to prohibit collecting sex and focused on gender.
c. Discussion on this approach:
i. Using ‘o’ or ‘x’ - are we just taking the hardest part and pushing it into one category?
ii. Means you may not have to try to incorporate culturally specific terms (and then by doing so, overlook some).
iii. Will be applicable to new machines that emerge.
iv. X alert to look deeper into conditions (e.g. transitioning) that are important to a lot of context beyond gender identity.
v. What to do with privacy considerations - when someone enters a clinic, do you want to put something in there that is too privacy sensitive. As soon, as you put X, does it draw attention to an area that may be too sensitive?
vi. However, it could be masked -- if people go look for X, they may not be allowed to view the information. Sometimes you will be stuck and not know what the X is referring to. How to address this for a more specialized area (e.g. vaccination)?
vii. How to address people who have transitioned - we need to consider more than a tri-identity, particularly in the context of gender identity.
viii. California says not binary, instead of X.
ix. Andrew Pinto’s team using sex and gender using two category approach, where it is very detailed, and also gathering sexual orientation.
x. Stats Canada is reflecting similar to Australia. In Ontario, healthcare card no longer reflects sex or gender.
xi. The combination of m/f/x may not be the way that people want to communicate - is it too restrictive?
xii. Have to reach out to the communities to see if it will work.

4. Go from an existing system to a new system.
a. Canadian statistical - what to do with the data where you have lost the context of historical data. Think about fixing the future, and not fixing the past.
b. How to address older systems - how to go forward and how to address them when moving to a two category system?


5. Review of the harmonization spreadsheet. confluence.hl7.org/display/VOC/2019-07-29+Gender+Harmony+Meeting+Agenda+and+Notes?preview=/40743893/55939587/STANDARDS_HARMONIZATION_Context-rjh-added-contexts.xlsx Once the context on the spreadsheet has been fully consolidated, encourage everyone to add to the both the use and context pages on the spreadsheet.

Thanks,
Marcy

Marcy Antonio, PhD(c), MPH, BSc(Bio)
Interdisciplinary Doctoral Candidate
Health Informatics and Nursing
University of Victoria