Sex-Gender Stakeholder Consultation Session 2 - Follow-up

I like the idea of having the service provider fill in the options based on what the client/patient is describing. We also need options for other use cases, including written surveys. In the nursing homes project I was describing, the organization rejected any options other than Female and Male with the rationale that our suggestions were too complicated for the residents to fill out themselves. As you say, that just perpetuates stigma and discrimination and it was the wrong decision.

We need to have option sets for different use cases. My use cases are mainly in social services, public health and community mental health, not medical/physical health care, so we seldom need to know sex at birth or organs/hormone status, just gender identity and administrative gender. We do want to use the same vocabularies as the health system whenever we can, partly to contribute to information around social determinants of health and the importance of community supports in health.

We also need a way to aggregate data across organizations that use different value sets. Some cultural terms include elements of sex, gender and sexual orientation, and aren't neatly divisible into those three categories; it makes it hard to aggregate. On the other hand there are serious privacy risks if we report results based on small cell sizes. I don't know if I'm being clear here...

We have not come across using "Third Gender" as yet. Something I need to look at a bit more deeply. Two Spirit is intended to reflect Indigenous Peoples of Canada and was an important piece to include as we navigate through our journey as a healthcare system with the TRC.

The gender options are universal, all sites, departments, etc. will use the same codes. We do not have the ability to suppress lists. I'm not sure it is something we would want to do in our settings. Consistency of language is important and using this language helps to socialize people to the existence of these identities which, of course, reduces bias, stigma, etc. However, I hear what you are saying about minimizing options and how too many can be overwhelming. In most cases, it isn't the patient or client that sees this list and selects from a list. It's in conversation with the health care provider and if they feel safe, might share an identity that more reflects who they are and the health care provider asks if they would like what they shared reflected in their health information system. That would be the ideal encounter. We've also heard in long term care and continuing care facilities that there is a very large gap for providing culturally safe and inclusive care for LGBTQ2S+ elderly people. Many are isolated, alone. Many have had to go back into the closet when they enter these facilities because the facilities, systems and people working in them are not inclusive. When they can see their identity reflected in the system they are relying on for care, it can mean all the difference in their physical and psychological health and well-being. I would hate to make it more comfortable for the dominant group at the expense of an already vulnerable group.

Hi, Marni -
How would you compress or expand the list of options where appropriate? E.g., I was involved in these two projects:
1. In Ontario nursing homes, where during pilot testing the residents found multiple options for sex and gender very confusing, and we had to use as few options as possible;
2. For immigrants and refugees where Two Spirit was not a meaningful option but 'Third Sex' (sometimes called Third Gender and sometimes using more specific terms, like Hijras) would be useful.
In those two cases would it make sense to combine some options under 'Not Listed' and add others (like Hijras) that would be aggregated centrally as 'Not Listed'?
Gillian

Thanks, Gillian! I may have misunderstood the intent of pointing out this document as an example we could use.

Thanks, Derek. I understand when we are talking about "Sex" that there a limited number of possibilities. F, M, X, U. is what is used in Alberta, What I was referring to is the wording in the definition itself. When we used language like "Male or female or anyone other than male or female" ... that's the problem. Not the number of codes themselves. It's the definition that is very much derogatory.

I agree with all of your comments regarding gender identity (Admin Gender is different and is in line with identity documents, vital statistics, birth certificates and driver's licenses in AB. etc.) Gender Identity is much more broad and self-identification is and should be the sole source. It's what we do with it after that is important. Printing / displaying on labels, charts, wristbands, etc. Where we need admin gender or sex at birth then our principal is to always include gender identity as well. If we don't need admin gender or sex, then only include gender identity. In Alberta we use these codes for gender identity: (Note, instead of "other" we use "not listed". We do not have the ability to add user defined labels as yet but can easily modify this list as our understanding grows). I want to say Gender Queer has been added but I don't have access to that ATM. Note, they are also alphabetical (important because we often put M first, then F, then everyone else which just reinforces a value / hierarchy).

– Agender
– Choose not to disclose
– Female
– Intersex
– Male
– Non Binary
– Not Listed
– Questioning
– Transgender Female
– Transgender Male
– Two Spirit

I think Marni makes an important point: the (erroneous) conflation of sex and gender seems, to me, to be exactly the problem we're working to address in our working group. That said -- I fear that it is easy to fall into the trap of thinking that these two concepts have the same properties... because they don't. Sex is a clinically-definable (and measurable) person-centric attribute. There will be, I believe, a fairly well-defined and well-constrained code list that we'll be able to use to record a person's Sex.

Not so Gender, unfortunately. It doesn't seem, to me, that Gender is something an external test could measure... certainly not given the way we've been understanding this concept during our calls. A consensus seems to be emerging that people must be afforded the right to self-identify their Gender and have it recorded in their EHR demographic record as they choose (if they so choose). Furthermore... the "code list" (were we to be able to define one) would need to be fluid so new expressions for Gender that emerge over time can be added (and others, perhaps, retired). Also... we need to support that a person's self-identified Gender can readily change (whereas the process of changing one's Sex is a more involved, quite medical one).

So... the notion that Sex might be defined as female, male, plus some small set of additional codes is not derogatory or "othering"... it is simply the act of unambiguously collecting and expressing this (crucial) clinical fact about a person. Regarding Gender, however, I believe we need to take care that we don't, in how we collect and reflect it in our EHR demographic records, inadvertently operationalize insensitive practices.

Lastly... I noted on the last call that we need to guard against conflating the concepts of gender and sexual orientation. Were we to decide it is important to express them all in our EHR demographic record (and I'm not positive we yet have a consensus that this is required) -- I think it will be important to recognize that Sex, Gender and Sexual Orientation are three independent attributes.

Warmest regards,
Derek