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This is project born of the ongoing frustration the ideas encompassed by "sex" and "gender" have never been easy to capture consistently within health models. Those terminologists among us have always said this topic was the quintessential example that proves "terminology is hard." This project is going to try use some tried and true approaches to how we model information (data elements, value sets, code systems) and use them define/harmonize some aspects, likely not all, for representing sex/gender. This project will result in a balloted informational document that will define use-context collections that also include appropriate value sets. These artifacts can then be associated with model elements using binding parameters that are informed by the metadata the project will identify with each use context. 

The project must take into account actual user needs and include end user communities, including the international community. Communities such as DaVinci, HSPC/CIIC, Argonaut, IPS, pharmacy, the LGBTQ community and many others. Importantly we must walk that fine line of allowing multiple approaches to very similar things without requiring harmonization from the outset, yet we will harmonize if at all possible.   

We expect that once completed, the set of use-contexts, currently called sex-gender types, can be used to clarify that certain existing model implementations actually intend users to assume one sex or gender entry actually represents multiple distinct sex-gender types that can in fact have different values that use the same code. For example, a single "sex" field that at data entry time is perceived to mean "current gender identity" but is then subsequently used to represent "current phenotypic organ clinical sex." In that case the initial choice of "M" may in fact properly be represented as "F" for the latter use.

Link to the Vocab Q4 minutes where this was discussed


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Gender Harmony Meetings

Every other Monday 4pm ET using

https://join.freeconferencecall.com/vocab. First call May 20

NO CALL JULY 15th - Project leaders are both in transit to NCQA/HL7 Digital Quality Summit


Project ID 1533

TSC Approval 2019-07-08

Project Naming

Some folks suggested we try a different name to ensure communication makes it through e-mail filters.  Please list any suggested project names here:


DIGS - Discrete Interoperability for Gender and Sex

New DIGSY - New Discrete Interoperability for Gender and Sex, yo.

Short URL for project: http://hl7.me/GHP

LOINC definitions of Sex and Gender

WHO on Gender

German HL7 page on Geschlecht (Gender)

Health Standards Collaborative Approaches to Terminology for Gender and Sex

  File Modified
JPEG File image003.jpg Feb 13, 2019 by Rob McClure
Microsoft Excel Spreadsheet STANDARDS_HARMONIZATION_INCLUSIVE.xlsx Jun 27, 2019 by Rob McClure
Microsoft Word Document Standards Harmonization QUESTIONS for meeting.docx Jun 27, 2019 by Rob McClure
PDF File WPATH Article.pdf Jun 28, 2019 by Rob McClure
Microsoft Excel Spreadsheet Gender_Identity_Research_and_Use_Cases_07012019.xlsx Jul 01, 2019 by Manisha Khatta
PDF File Care of the Transgender Patient aitc201907020.pdf Jul 02, 2019 by Rob McClure
Microsoft Excel Spreadsheet STANDARDS_HARMONIZATION_Context.xlsx Jul 10, 2019 by Kaitlin Perkins
Microsoft Excel Spreadsheet STANDARDS_HARMONIZATION_Context-rjh-added-contexts.xlsx Jul 31, 2019 by Kaitlin Perkins

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5 Comments

  1. 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


    1. Great minds think alike. Just added it here: Issues, Examples, Areas of concern

  2. I like: DIGS - Discrete Interoperability for Gender and Sex

  3. 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

  4. 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.