HL7 International Gender Harmony Ballot Comments for Feedback

Folks, thanks to all those who provided their feedback on the summary posting we made regarding the HL7 Gender Harmony Ballot. I compiled all the comments received and entered them into the three spreadsheets - one for FHIR-R5, one for H7 IG Sex Gender R1, and one for V291-R1N1. These comments were submitted on Oct 8/2022 at 10am PT via the Contact Us page.

I have also copied the contents of these three spreadsheets into a new spreadsheet called SGWG-HL7R5-ballot comments SGWG-HTC ballot - votes and comments which I have posted in the SGWG Documents tab under the 2022 session folder - see infocentral.infoway-inforoute.ca/en/resources/docs/sex-gender/2022-sessions/working-group-meeting-information/3999-sgwg-htc-ballot-votes-and-comments SGWG-HTC ballot - votes and comments

I hope I have captured all your feedback accurately and entered them correctly in the ballot spreadsheets. If there is any omission or misrepresentation of your feedback I bear sole responsibility for such errors.

Thank you for all your participation in this important ballot.

Francis Lau on behalf of Karen Courtney, Aaron Devor, Kelly Davison and Roz Queen, the UVic GSSO-EHR team

Thank you, Francis, for posting notes from others so their views can be reflected in this thread.

Please appreciate that I do not have an agenda except insofar as this ballot item may either support or undermine efforts that I've been involved in related to the use of digital health standards to systematically improve care delivery. To be clear -- my concern is purely related to the correct and unambiguous recording of sex for clinical use in a medical record. This is needed so that patient safe data processing can be done in support of Computable Care Guidelines, and other promising initiatives that can systemically improve care quality and safety.

I remain wholeheartedly supportive of the clear distinction between the sex data element and the separate data element that will capture gender -- and I've been an advocate of this clear distinction for a very long while, now, and have devoted time and energy to helping important changes get made (as have so many others on this thread). Each of these distinct data elements is equally important -- and each should contain the correct information.

It remains my fervent hope that we will not put at risk our ability to provide patient-safe care -- to everyone -- by not adopting a clear and simple way to code SFCU values. It remains my equally fervent hope that no one will refuse to present for care if, in their electronic record, both the gender data element and SFCU data element are correctly recorded in order to support the use cases for which they're intended.

Warmest regards,
Derek

Folks, Karen also has a comment about biological sex that I will relay here ... "For example, someone assigned male at birth, who no longer has testes, does not produce Testosterone and with HRT has typical levels of estrogen in their body. Not sure how that matches their ‘biological’ (not a good word by the way) sex."

Folks I received a comment from Karen Luyendyk in response to an earlier posting about sex-for-clinical-use (SFCU) and the need to remain "apolitical" and to "focus on patient safety and quality of care issue."

Karen's response is that - "this IS about safety and quality of care, that someone is seen as who they are and information regarding the organs they have and their hormone compliment etc is available." and "being apolitical seems to equate with accepting the historical status quo and disregarding gender diversity as a fundamental truth wholly ignored by a cisnormative system. Discrimination tends to be best understood by those who are discriminated against. It is the health system as a whole and digital health systems in particular that are the problem, not the patients."

If you have opinions about this issue we would like to hear from you ...

Thanks -Francis

I agree with all the comments made by this contributor.

Point 2: If I came in to a clinic and saw my gender or anything in my file as anything but a woman, I would never come back. This isn't a politics. This is who I am. A system trying to tell me otherwise is the problem we are trying to fix. Indeed, this IS a quality of care issue. And this IS a patient safety issue. I haven't felt safe sharing my opinions here for some time now which is why I've pretty much silenced myself of late. Imagine how a patient feels about their safety. So yes, I do agree this is a patient safety issue. Calling me anything other than a woman. Not providing me care based on my organs and what I present with, is the exact opposite of patient safety.

Point 3: By adhering to outdated understanding of sex and gender, by reinforcing stereotypes and a binary of sex and gender, by using language that continues to perpetuate outdated beliefs, stigma and discrimination, by forcing trans and non-binary people to fit into these narrow views is the opposite of being apolitical. "don't find the argument of discrimination being persuasive". I find this offensive. Discrimination, and the impact of discrimination, is best defined by the the people who actually experience it every day. It is real. It is profound. And because of that discrimination and stigma which this approach reinforces, means, once again, we will be continually harmed and at some point just not come back. There is a reason why suicide attempt rates are 50% among our community. Each time we see these microagressions in our community, in our healthcare system, draws a bit more from our tank. Until there is nothing left. My very existence is political. And quite frankly, I'm tired of having to prove over and over my existence, experiences ignored, and made to try to fit a system that was not designed for me rather than finally making a system designed by the very people we aim to care for. I'm tired. So tired of this.