HL7 Gender Harmony Sex-for-Clinical-Use (SFCU) Issues - Proposed Alternative

The point Karen is making, and one I completely agree with, is sex is not a reliable indicator of ranges for most tests and diagnostics. If you put my "sex at birth" and tried to do any labwork it would be out of range. And then I would view these abnormalities on my portal and be reminded once again by the healthcare system that the healthcare system doesn't see me as a woman, which is the opposite of providing affirming care and contributing to my gender dysphoria. Which means I will be less likely to come back and engage in healthcare which means I will and does have a significant negative impact on my health. This is well documented in the research for the majority of trans and non-binary people in Canada (G. Bauer). The underlying premise should always be ... treat people with the parts they have and not make assumptions about those parts based on what you assume to be someone's sex.

I’m not clear on why we can’t move directly to organ inventory since it’s a simple list and we already know what all the options are. We are left with a lot of questions, such as:

Who determines “clinical sex” while also ensuring the patient’s correct name, pronouns, gender identity are used when talking to and about them, while ensuring the patient isn’t “outed” putting them at even greater risk of discrimination, harassment or worse in the healthcare system?

How is ‘clinical sex’ determined for a trans masculine person who is pregnant?

If the clinician determines clinical sex, how is it determined, based on what? What the patient looks like? How would they know?

If it is the patient who determines this, then would a trans feminine patient with typical female hormones, with typically feminine gender expression, with fully updated identity documents need to select from a clinical sex that does not reflect who she is in order to fit into a system that wasn’t designed for her?

And would that be different from how cis patients select their gender?

And how does the system ensure that the only people who need to know this for the delivery of care have access to this information?

And how do we ensure that this info doesn’t end up in places like vaccine passports, wrist bands and prescriptions?

Will the technician who performs the tests do so without questioning the patient to verify what appears contradictory?

My sense is that SFCU is an interim step to getting to what we really want and need which is the organ/anatomic inventory. In the absence of the organ/anatomic inventory, there is a need right now for clinicians to be able to apply relevant settings and reference ranges for machines and diagnostics that operate in a binary paradigm and, particularly with machines, that need is going to persist for some time.
I know that we really want to get away from the use of the word 'Sex' and the notion of sex being the relevant characteristic but I think this is going to take time.
Adding the word Parameter is a compromise so that the SPFCU element isn't identifying a patient sex. Rather than a clinician looking at the data element and seeing the Patient sex as x, the clinician would look at the data element as see that they should use settings or ranges that are typically associated with sex y, or look at the comments for specific information about this patient. While this isn't ideal, I do think it is better than the original name.

I have the following thought for 3d:
Unknown. Apply settings or reference ranges that are safe for all populations


Joanie Harper

Hi folks,
I don't agree with the new proposed alternative name. My understanding was that we really wanted to get away from using 'Sex' in the enhanced and improved terminology. And I thought there was a reluctant willingness of that group to entertain the 'CCDATS' option (which though having more letters than SFCU is in fact considerably easier to say quickly) or the 'Clinically Relevant Characteristics' option?
Sex is in fact, NOT always relevant or indicative of anything, so why would we build around it?
I agree with asking for more info on the anatomic inventory development work and I'd like to see it as part of the proposal - since organ/anatomic inventory is ALWAYS relevant for EVERYONE.

I'm ok with 3a-c but don't like using the word 'sex' in 3d. I thought the other group was ok with 'Unknown Clinical Characteristics'?

Hi all, we had another SFCU Subgroup meeting today. After much discussion here is the proposed alternative for considerations by the SGWG and HL7 communities …

1. Ask HL7 for a more detailed plan on anatomic inventory development work (note - this is not part of the proposal but a request to HL7)
2. Change SFCU to Sex Parameters for Clinical Use (SPFCU)
3. Refine the proposed value set options and allow only single selection - see below

3a. Apply female-typical settings or reference ranges
3b. Apply male-typical settings or reference ranges
3c. Apply specified settings or reference ranges (see comments)
3d. Unknown sex characteristics

Also today’s SFCU meeting notes are available here

Please let us know if you find this alternative acceptable?

Francis Lau, Aaron Devor, Karen Courtney, Kelly Davison, Roz Queen
UVic Digital Health Equity Team