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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 to 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 represent 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

Please participate on determining values for Gender Identity!

Survey is now closed - thanks to all who participated.

Dashboard link:

Please participate!

You do not need to be an HL7 member to participate, but to leave comments and really get the most out of your participation, you will need an HL7 Confluence Login. To get one please Request an Account.

Like many of the HL7 projects, this project has matured and adapted over time, making some of the pages outdated. We recommend new participants engage by:

  1. Joining the bi-weekly calls
  2. Reviewing the Context Definition Page to review the context definitions created by this project
  3. For background information and/or to review information intially submitted by international project participants, see the Implementations and SDO Use Case page
  4. Leaving comments on any of the related pages
  5. Contacting project leads Rob McClure and Caroline Macumber with any other comments/questions or concerns

We need USE CASES for examples of situations where non-typical patient sex or gender has an impact on clinical care. See slide 2 in this presentation as a general example but we need input on specific machines, lab tests, etc. that are impacted and how to implement in a non disruptive way.

Gender Harmony Meeting Calls

Every other Monday 4pm ET for 90 min using

Join Zoom Meeting - | Meeting ID: 718 380 6281  Password: 370553

Dial-in: +1 646 558 8656 US (New York)

Find your local number:

View all call details at

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:

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

Canada Health Infoway Sex and Gender Working Group

  File Modified
PDF File Original GI Survey.pdf Sep 18, 2020 by Rob McClure
Microsoft Word Document HL7 Survey - CIHI Response.docx Sep 18, 2020 by Rob McClure
PDF File Gender_Sec_sexualOrientationJAMIA Article.pdf Aug 11, 2020 by Rob McClure
PDF File SOGI global survey research.pdf Aug 11, 2020 by Rob McClure
PDF File FCSM_SOGI_Terminology_FY20_Report_FINAL.pdf Aug 11, 2020 by Rob McClure
Microsoft Powerpoint Presentation DQS-2020-GenderHarmony v6.pptx Jul 27, 2020 by Caroline Macumber
Microsoft Powerpoint Presentation sex-gender20200724.pptx Jul 27, 2020 by Robert Horn
Microsoft Word Document Provenance-use-cases-sex-and-gender-20200727.docx Jul 27, 2020 by Robert Horn
PDF File 2018-Jun-25-ACLA-Best-Practice-Patient-Gender-Final.pdf Jul 22, 2020 by Rob McClure
PDF File GI Survey Data_All_200713_PDF.pdf Jul 13, 2020 by Rob McClure
PDF File BC Gender & Sex Standard review_Lorraine.pdf Jul 13, 2020 by Rob McClure
Microsoft Powerpoint Presentation sex-gender20200713.pptx Jul 13, 2020 by Robert Horn
PDF File AMIA20GH Panel Final.pdf Mar 23, 2020 by Rob McClure
Microsoft Word Document cp1927_16_Patient_sex_and_gender.docx Jan 27, 2020 by Rob McClure
Microsoft Word Document cp1927_15_Patient_sex_and_gender.docx Jan 13, 2020 by Rob McClure
Microsoft Word Document cp1927_14_Patient_sex_and_gender.docx Dec 16, 2019 by Rob McClure
Microsoft Powerpoint Presentation HL7 gender harmony presentation oct21-2019.pptx Oct 21, 2019 by Caroline Macumber
Microsoft Powerpoint Presentation USCDI Session - Interoperability Forum-Just GH.pptx Aug 25, 2019 by Rob McClure
Microsoft Excel Spreadsheet STANDARDS_HARMONIZATION_Context-rjh-added-contexts.xlsx Jul 31, 2019 by kaitlin_perkins
Microsoft Excel Spreadsheet STANDARDS_HARMONIZATION_Context.xlsx Jul 10, 2019 by kaitlin_perkins
PDF File Care of the Transgender Patient aitc201907020.pdf Jul 02, 2019 by Rob McClure
Microsoft Excel Spreadsheet Gender_Identity_Research_and_Use_Cases_07012019.xlsx Jul 01, 2019 by Manisha Khatta
PDF File WPATH Article.pdf Jun 28, 2019 by Rob McClure
Microsoft Word Document Standards Harmonization QUESTIONS for meeting.docx Jun 27, 2019 by Rob McClure
Microsoft Excel Spreadsheet STANDARDS_HARMONIZATION_INCLUSIVE.xlsx Jun 27, 2019 by Rob McClure
JPEG File image003.jpg Feb 13, 2019 by Rob McClure

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  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

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

  2. Unknown User (zanderkeig)

    I like: DIGS - Discrete Interoperability for Gender and Sex

  3. Unknown User (dmacfarlane)

    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:, 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: 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.

    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.  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:   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. Unknown User (rjhorn)

    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.

  5. Unknown User (mantonio)

    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.