JAMIA: A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study–—The PRIDE Study  

https://academic.oup.com/jamia/advance-article/doi/10.1093/jamia/ocz082/5509461

I like: DIGS - Discrete Interoperability for Gender and Sex

hi everyone, I wanted to introduce myself.

I work as the Director for Rainbow Health Ontario, which is a program that is unique in Canada.  Our role is to create opportunities for the health system to improve the health of LGBT2SQ people in Ontario.  Rainbow Health Ontario is a program of Sherbourne Health, which has one of the largest patient panels of trans people in Canada.  I've also served on the Board of CPATH, the Canadian Professional Association for Transgender Health, including as its president.  I'm also out as a trans person. 

I'm really excited that there's some work being done to address sex & gender in health administrative data. At RHO, we think that fields related to sexual orientation need to be captured as well, AND I understand that that's likely outside of the scope of this project.

For a bit of contextual information, Rainbow Health Ontario recently brought forward the need for collection of health administrative data (amongst a number of other issues) in our brief to the House of Commons Standing Committee on Health's very recent study on LGBT2SQ health in Canada.  The report from the committee was just released a couple of weeks ago and overall is strong; its recommendations, though, didn't pick up on making changes to health administrative data.
The next step is for the government to submit a response to the report & recommendations.  FYI the report can be found here: https://www.ourcommons.ca/DocumentViewer/en/42-1/HESA/report-28/, and as I just did a scan of the table outlining how terms are being used, I thought it might be helpful to see one particular recommendation (#9) from this report, in terms of a) what language is currently being used federally, and b) what's specifically being asked of Statistics Canada:  "That the Government of Canada, through Statistics Canada, include questions on sex at birth, gender identity and sexual orientation in all its surveys regardless of respondent age and on a priority basis in surveys on health, housing, income, homelessness and the use of alcohol, tobacco and other substances"  (p.43).

Looking through the resources, there were a few others that I'm familiar with that I didn't see listed and may be of use.

The most current an influential Canadian evidence I'm aware of regarding 2 part sex and gender questions is this article: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0178043.  My understanding is that this article, and the research behind it, is probably the most well-considered and evidence-based, and included testing questions across sexual orientations, gender identities, and ethnicities in Canada. The lead on this study, Dr. Greta Bauer, is considered to be one of the foremost researchers in trans health in Canada.   This study built off a US approach and a Canadian approach both of which had had limited (if any) testing for validity; their work  has been informing a lot of the thinking in the country, including in Stats Canada's relatively recent move to ask a 2 part question: sex assigned at birth (assigned sex) and gender identity.  

Some of you may be familiar already with the work being done at CIHI (Canadian Institute for Health Information) to create definitions of health equity stratifiers. This document includes their  health equity definitions.  They're also recognizing the need for a 2 part (sex assigned and birth and gender identity) question, and last year released a set of definitions. https://www.cihi.ca/sites/default/files/document/defining-stratifiers-measuring-health-inequalities-2018-en-web.pdf. 

I understand that CIHI is currently working on a pick-list for the Primary Health Care EMR Content Standard - if the project leads OR Gender Harmony are looking for near-future opportunities for application of the sex and gender measures, this might be a great opportunity.

In Toronto, since 2014 or so, hospitals and community health centres have been mandated to ask a series of 8 socio-demographics questions on health equity, these included a question on gender, and also a different question on sexual orientation (they didn't ask about sex assigned at birth, so this may be a bit of a gap).  I'm thrilled that the questions are being asked, and I think there is room for improvement in the options provided.  http://torontohealthequity.ca/.  An article by Pinto et al published in CMAJ (Canadian Medical Association's journal) addresses the routine collection of sexual orientation and gender identity data, which highlights the need for 2 part gender questions re sex assigned at birth and gender identity, as well as the importance of questions related to sexual orientation:  http://www.cmaj.ca/content/191/3/E63?rss=1&utm_source=TrendMD&utm_medium=cpc&utm_campaign=CMAJ_TrendMD_0.   These are the same questions as identified in the Toronto Health Equity project; Pinto et al articulate that the questions were pilot tested but not validated.

Cheers, Devon

I added some contexts to the Context Spreadsheet.  These are not contexts for which a particular standard is set.  They are contexts in which I've seen sex/gender attributes used.

Also, we should consider the privacy/security consequences of various choices of coding.  There are codes for situations that are extreme private and rarely disclosed to the general public.  Perhaps there should be a column similar to context to capture that aspect of a coding.  How suitable is this coding for public disclosure, and if it should not be made widely public, what situations are appropriate for disclosure.  One extremely private example is CAIS, especially when diagnosed in the context of fertility problems.  The patient, gynecologist, etc. need to know.  The public does not, nor do most medical staff.

Below are some further considerations around 'sex for clinical use' that Zander Keig, Francis Lau and myself  have been discussing:

1. The need to develop use cases with a comprehensive list to ensure we address how masking will be used.  Examples include:

What level to mask at? If we mask only 'other', but not 'M' of 'F', will it ensure the privacy we are aiming for? However, we need to make sure that masking isn't occurring for radiology, pharmacy, etc.

What if people call in and things may appear in-congruent in their record. For example if someone calls in to change an appointment, and their voice may not match with what is on record.

How to address people who might not be comfortable asking sex/gender questions?  Requiring the information to be filled out, so that people cannot bypass the questions and leave them blank. Points to the need to develop policies and training within the use cases.

2. Is 'other' the right term? When information is self-reported, 'other' may not bother people who never have to select 'other' but can be very frustrating for people who always have to select other.

3. Legal categorization - jurisdictions use gender and sex differently. Currently, no US State or Federal Government ID uses GD.  It is confusing because some States have "legal gender change" court process (ex. California and Kansas) in order to correct sex marker on a birth certificate and/or drivers license. The US Passport says sex, not gender.  

Has there been any discussion regarding pronouns? It looks like LOINC actually has them (https://loinc.org/90778-2/) which is actually incredible; was genuinely surprised.

I've posted this in the "Proposed value sets" page (under the Context Definitions sections), but thought it would also be good to post here. I'm taking comments on the tables on a Google doc which is located here:  .

I did a brief Facebook poll within the Trans PhD Network and received the following results when asked for third option for SFCU. It is notable that we might be able to split the difference of understandability and de-pathologization by using a "see comment" or "see patient history" type of option, but I'm wondering how that would look in current systems.

votes.png

Rob McClure and Caroline Macumber, 

Arien Malec and I are co-chairing the new ONC Interoperability Standards Workgroup, which is kicking off with our first meeting on 1/25/22.  Part of our charge from ONC, as outlined in the recent ONC Standards Bulletin [https://www.healthit.gov/sites/default/files/page/2022-01/Standards_Bulletin_2022-1.pdf] is to provide "input on the USCDI concept of Sex Assigned at Birth, its associated vocabulary standards (value set), and specifically whether the term itself and its value set should align with Gender Harmony’s definition for Recorded Sex or Gender."  In support of our charge, it could be helpful for our workgroup to have a presentation from the Gender Harmony Project leads and to hear the pros and cons of making changes to Sex Assigned at Birth as it is currently included in ONC certification criteria.   If you are interested in making such a presentation, please contact me at LaneS@SutterHealth.org and Arien Malec (arien.malec@changehealthcare.com) with a CC to Albert Taylor MD (Albert.Taylor@hhs.gov).  Thanks!