Sex and Gender

Hi everyone, I have had a chance to review the original SFCU and new SPCU with clinical reps at Trans Care BC. If the SFCU/SPCU concept must be used, we are supportive of the alternative language and options proposed in the context of reference ranges and settings. We recognize this is not a final solution, but a forward step in a longer journey. We are keen to continue developing use cases and client centred implementation guidance related to this topic and look forward to rapid development of an anatomical inventory. Thanks! Lindsay

Folks, This is a gentle reminder that there is a SFCU subgroup meeting on Thursday Jan 26 at 1130am PT / 230pm ET to discuss the proposed alternative Sex Parameters for Clinical Use (SPCU). Here is the link to the proposed alternative in PDF - https://infocentral.infoway-inforoute.ca/en/resources/docs/sex-gender/2023-sessions/working-group-meeting-information/4062-gender-harmony-project-alternative-to-sex-for-clinical-use-2023-01-23 The zoom link for the SFCU subgroup meeting on Thursday Jan 26 meeting at 1130am PT / 230pm ET is https://us02web.zoom.us/j/82612447163 Thanks - Francis

Hi Folks, the slide deck and meeting notes can be found in the 2023 Session folder here. https://infocentral.infoway-inforoute.ca/en/resources/docs/sex-gender/2023-sessions/working-group-meeting-information I will let you know when Karen's deck is posted. Thanks! Kelly

Greetings folks, and welcome to 2023. This is a gentle reminder that our monthly meetings will resume on Tuesday, January 24. Draft Agenda 1. Welcome and Land Acknowledgement 2. Ground rules for respectful dialogue 3. Purpose of Infoway Sex and Gender Working Group 4. Karen Luyendyk – Use Cases Development 5. HL7 Gender Harmony Project 2.0 Ballot Comments Update 6. Schedule Review 7. Adjournment Please send agenda requests to me at [email protected] I have not changed the meeting link or details. If you'll recall, we had to update the registration link in late 2022 because of a security update. This Zoom instance is good until the end of 2023. No meeting in December. If you did not attend meetings in October and November, Please ensure you are registered using the following link: https://infoway-inforoute.zoom.us/meeting/register/tZIqf-yoqjIpGtFrqu1R8-9WMY1j8oDWjXZl Also, please note our guidelines for respectful dialogue. - Express disagreement with ideas not personalities - Share airtime - Stay on topic - connect to what others have said - Understand & learn from each other - We are all equal. Leave rank at the door - Listen respectfully especially when you disagree. Acknowledge you have heard the others - Look for common ground - Identify & test assumptions See you next week! Kelly Davison

Hello everyone, I think that everyone has outlined a lot of problems, positives, and considerations about Sex Parameters for Clinical Use (SPCU). I have read them all, have attended the HL7 meetings, been on the UVic team for 3 years, and have some lived experience in this realm as a patient. This posting is my personal perspective and thoughts based on my personal and professional experience and knowledge. From my perspective, I think of SPCU as a small step towards making a healthcare system that is more equitable with better patients experiences. It is by no means a perfect solution. It has many faults. There are a lot of complexities that will need to be addressed in the implementation and use of SPCU within real clinical settings. However, I think that SPCU will reduce harm and help to create a more affirming and equitable healthcare system. I wish we could take a large leap, which anatomic inventories and CCDATS would be. However, I see SPCU as a compromise between many stakeholders that will lead slowly into a more ideal future for healthcare. I would also like to emphasize that there is a very real cost to not voting or voting in the negative. Harm is occurring within healthcare currently, especially for trans people. The status quo is violent If SPCU is not accepted nor implemented, this harm will continue to occur. And with how slowly standards move, this harm could continue for years before another solution is accepted. Some systems, such as AHS's CIS, can readily serve patients in an affirming, equitable manner. And I really applaud that and think it is a great example of that more ideal future that I spoke about above. However, from my perspective and knowledge, AHS is an exception in a healthcare world that is non-affirming and non-equitable. Those are my thoughts and perspectives on this complex and nuisance topic. I hope what I said was clear and concise.

Regarding the request for comment on Sex Parameter for Clinical Use (SPCU) I am perplexed as to how trying to make a choice based on these criteria creates a more usable system for a patient who has breasts, typical estrogen levels, a neo vagina, a prostate and a penis but no testes. Or someone who has ovaries, but no uterus, and is on very low dose Testosterone. Or someone who is currently on Testosterone, but planning a pregnancy or is unexpectedly pregnant. Or someone who is intersex. How do these SPCU reference ranges etc even work for these folks? What would SPCU tell the clinician and how would the parameters be applied to these individuals and how would the questions be asked? To me, this creates much more confusion and has the potential to lead the clinician down the wrong path than simply stating the currently true clinically relevant characteristics for the patient. And if I come in with a broken leg, most if not all of the above, is irrelevant. It's time to move away from male and female 'typical'; those are binary concepts and neither gender, nor even sex (eg. for intersex folks) are binary. And the last option: 'Unknown clinical parameter setting or reference range/ No pertinent data available.' Is equally problematic. It seems a fancy way of saying we're not sure which box this person fits into. What, who determines which 'data' is 'pertinent'. Doesn't it depend on the reason the person came into contact with the health system? Like I said, if my leg is broken, that's what's relevant. SPCU seems to make this so much more complicated than it needs to be based on a prima facie assumption of the binary male/female typical. It really is time to let that go. Karen

I appreciate and respect there are many people on this forum with many years of academic, research and lived experience. I wish to offer the perspective of someone, also with lived experience, but also many years real life professional experience of sitting at bedside, in clinics, working with lab services and diagnostic imaging, supporting the implementation and use of a CIS for millions of people that addresses and resolves many of the issues being discussed here. It hasn't been easy, it is certainly not perfect, but has already had an incredible, positive impact on many SOGIE patients. Consider: 1. A trans woman is given a requisition for regular bloodwork including a PSA screening (to test for "typical male range") and estrogen levels (to test for "typical female range" and thyroid, CBC, etc.. There is only one requisition, what "clinical sex" would be entered on it? M? F? U? based on what? How would seeing M impact this patient? Would the downstream system in the lab even allow a PSA screaning for a woman? (This was the case in Alberta about 8 years ago but has since been addressed, now women can get PSA screenings, STI, HRT tests and mammograms all at once). 2. Even if we were able to put a clinical sex on a requisition in addition to their administrative gender and/or gender identity, there are thousands of public and private downstream labs and D&I clinics that would only have one sex/gender field in their system. In most cases, this field will have been populated by previous visits, information from their healthcare card, etc. They would not be able to change that one marker for different tests. 3. Since these downstream systems would not be able to accept additional sex markers like clinical sex (without inadvertently and incorrectly changing the sex/gender they have on file for the patient) the alternative would mean assigning that marker to the patient and not the individual tests. This raises all kinds of concerns for that patient that have been discussed extensively in this forum. 4. The suggested process of determining when to apply a "clinical sex" to a patient or the test they will be having are based on "observable characteristics". Firstly, many of the characteristics that would influence how those tests should be read are not observable. Secondly, this still opens up the patient to be identified based on a number of assumptions. Our goal is to remove as many assumptions from the system as we can and treat the patient based on the parts they have. I understand the purpose of having some lab test that require "typical sex" ranges. I really do. However, the use of clinical sex does not solve the issues in the labs and D&I clinics but does increase the likelihood the patient will be misclassified and misgendered. I am going to share personal medical information here so I trust you with it. A few weeks ago, I found myself in the ER with significant lower back and abdominal pain. Fortunately, I was at one of our sites who had recently installed our new clinical information system. I had all my bloodwork done, urine samples, and had to be sent for abdominal and pelvic x-rays. At no time was a "clinical sex" or "sex at birth" entered or needed. All the tests were set using the administrative gender of F that is on my Alberta Health Care Card and in the CIS at the ER. After the tests, my physician was able to look at my history, see that I was on Estradiol, she asked why. I felt safe to say it was because of my gender affirming care. She then asked what surgeries I had. I replied I had GRS. She then asked if I had both testicles removed. She went on to explain she wanted to rule out the pain being caused by a testicle that was undescended but not removed during surgery. (That wasn't the cause). This is a GREAT example of treating a patient with the parts they have. She was then able to go into the CIS to update my organ inventory so that question doesn't need to be asked the next time I should find myself in the hospital or clinic. We were able to find the source of the pain, I received the care I needed, when I needed it. It is the very experience I would hope for every trans person. At no time would "clinical sex" been needed or relevant. In fact, including it anywhere, and having it been "male" to test my PSA, would have done much more harm than good. The issue comes down to the relationship between HCP and the patient. Treating the patient, not the machine. An HCP with any amount of skill would be able to take whatever results were provided in a test and apply it to the specific needs of their patient. (e.g. There are many cis women who have higher testosterone. Many cis men who have higher estrogen.) If 'clinical sex" was offered to the physician, they might have felt they needed to enter something there. Based on what? BTW, in Alberta, if a patient has F in their Admin Sex/Gender field on their health care / cis, "typical female" ranges will be used. If they have "M" then typical "male" ranges will be used. If they have X (or in rare cases, U), (so either they have not disclosed, we do not know for sure or they are non-binary) the range will be set for the lower range of one sex and the upper range of the other sex. Most of what we have been discussing has been theoretical and in the abstract. It's important we understand it from a practical application at bedside and examination room and how this information comes from upstream systems (like government registration) and feeds thousands of downstream systems that will only be able to have one field and it's a field that is already pre-populated based on registration data. Having been one of the "very vocal and passionate" voices here, I must admit it that has not been easy. I may need to step away from this specific work for a bit for my own well-being. While I come to this work with significant professional expertise, this also requires I dig deep into my own lived experiences as well. And that part has been draining. I sincerely wish you all the best in this very important work. As I step back a bit, I must remind you that the experiences of trans men, trans women and non-binary people in healthcare are vastly different from each other. I do hope you actively seek out the experiences and perspectives of other trans women. Hope this helps. Marni