Implementations and SDO uses

This is a list of known required representations of sex and gender identity.

A summary of SOME of the information below, provided by HL7 Germany, can be found here: Gender Coding with International Data Exchange Standards

*Denotes - Initially pulled from Health Standards Collaborative Approaches to Terminology for Gender and Sex

Australian Specifications (Provided by Saludax)

A Sex data element is provided and is defined as: Biological distinction between male and female.
A Gender Identity data element is provided and is defined as: The behavioural, cultural or psychological traits typically associated with a specific sex, indicating the sex with which the individual considers he or she is, or desires to be, associated. Gender is not the same as sex, which is determined by biology.

Standards Austrailia

The value domain for Sex consists of the following values

• Male
• Female
• Intersex
• Indeterminate
• Not Stated
• Unknown / Inadequately Described

The value domain for Gender Identity consists of the following values:

• Male
• Female
• Intersex
• Indeterminate
• Other
• Person prefers not to say
• Unknown / Inadequately Described

To date few Australian specifications have adopted the Gender Identity data element

METeOR is Australia's

Repository for national metadata standards for the health, community services and housing assistance sectors.

Sex (METeOR identifier: 269716)1 data element concept related defines it as follows: Sex is the biological distinction between male and female. Where there is an inconsistency between anatomical and chromosomal characteristics, sex is based on anatomical
characteristics.

Sex, code A (METeOR identifier: 602450)2 with a value domain which includes
• Male
• Female
• Intersex or indeterminate
• Unknown

Gender (METeOR identifier: 635978)1 data element concept related defines it as follows: The way in which a person identifies their masculine or feminine characteristics. A person's gender relates to their deeply held internal and individual sense of gender and is not always exclusively male or female. It may or may not correspond to their sex assigned at birth.

Gender, code X (METeOR identifier: 635994) data element which implements the gender data element concept as a code with value
domain:
• Male
• Female
• Other
• Not stated/inadequately described

Cancer Registry (Germany)

The German cancer registry law provides for the following characteristics:

Canadian Institute for Health Information (CIHI)

SEX AND GENDER DATA IN SELECT CIHI DATABASES

Until 2017, in  the CIHI Reference data Model (CRDM), sex and gender was used interchangeably. Gender was described as a code used to indicate the gender or sex of a person. Sex and Gender are two closely related, yet distinct concepts.

CIHI lead a project that utilized internal consultations with teams that use sex and gender elements, consultations with Canadian Population Health Initiative team and external consultations with Statistics Canada and

Ontario Ministry of Health and Long-Term Care (MOHLTC). As a result the updates were made to the sex and gender standards as shown below

Tables and information here recreated from CIHI Sex and Gender Standards - Health Terminologies

Center for Addiction and Mental Health (Canada)

Information here recreated from http://www.camhx.ca/Publications/Resources_for_Professionals/ARQ2/arq2.pdf

German law / eGK 

The German legislation was changed in 2018

Gender can be specified:

HL7 Administrative Gender (provided by Germany) See http://wiki.hl7.de/index.php?title=Geschlecht

HL7 International changed the term "sex" to "administrative gender" back in the nineties. This refers to how a person wants to be treated administratively. Thus, only the following values ​​are available, which are also sufficient:

HL7 Gender Identity

Information from: http://hl7.org/fhir/valueset-gender-identity.html

http://build.fhir.org/patient.html#gender

*LOINC

LOINC Sex and Gender Concepts in Google doc - From Daniel Vreeman  

xDT (provided by Germany)

Gender of the patient

The gender of the patient is transmitted in the xDT standard of the KBV in field 3110:

*X12

Field 1068

007060 EDI Standard and found the attached references to gender and sex.

Data Element 1068, titled Gender Code and defined as Code indicating
the sex of the individual

*USHIK HITSP

Identify the sex structure of a person or animal. Excluded are codes related to clinical gender.

*IAIABC (International Association of Industrial Accident Boards and Commissions)

Claims Standards

The IAIABC EDI Claims Standards are used by claims administrators to report workers' compensation first report of injury and subsequent report of injury claims data to U.S. jurisdictions.

Gender code

Medical Standards

The IAIABC EDI Medical Standards are used by claims administrators to report workers’ compensation medical bill data to U.S. jurisdictions.These standards are based on the October 2003 X12 standards, referred to as Version 5, Release 1, Sub-release 0 (005010) ©2004 Data Interchange Standards Association, Inc. (DISA) in its capacity as Secretariat to X12

Employee Gender Code = X12 1068

*NCPDP

Gender

Specified in a couple of places

*OMOP Athena view

Gender and Sex

http://athena.ohdsi.org/search-terms/terms?domain=Gender&page=1&pageSize=15&query=

Saskatchewan eHealth

Gender: Health Registries use Birth Certificates, Passports, Immigration Documents and the New Born Registry as official gender identifiers.

The application used only supports

Male

Female

Unknown (in the instances where there gender is Unknown).

Regional labs also use Other which requires a resolution to Unknown if that truly is the case or if the gender just wasn't entered at order entry.

*US Office of Minority Health (OMH)
https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=3&lvlid=54

*US 2020 Census
https://www2.census.gov/library/publications/decennial/2020/operations/planned-questions-2020-acs.pdf

US 2015 Rule

Current testing expectations here

(n) Sex—(1) Standard. Birth sex must be coded in accordance with HL7 Version 3 Standard, Value Sets for AdministrativeGender and NullFlavor (incorporated by reference in § 170.299), attributed as follows:

(i) Male. M

(ii) Female. F

(iii) Unknown. nullFlavor UNK

(2) [Reserved]

(o) Sexual orientation and gender identity—(1) Standard. Sexual orientation must be coded in accordance with, at a minimum, the version of SNOMED CTsupreg; codes specified in paragraph (a)(4) of this section for paragraphs (o)(1)(i) through (iii) of this section and HL7 Version 3 Standard, Value Sets for AdministrativeGender and NullFlavor (incorporated by reference in § 170.299), for paragraphs (o)(1)(iv) through (vi) of this section, attributed as follows:

(i) Lesbian, gay or homosexual. 38628009

(ii) Straight or heterosexual. 20730005

(iii) Bisexual. 42035005

(iv) Something else, please describe. nullFlavor OTH

(v) Don't know. nullFlavor UNK

(vi) Choose not to disclose. nullFlavor ASKU

(2) Standard. Gender identity must be coded in accordance with, at a minimum, the version of SNOMED CT® codes specified in paragraph (a)(4) of this section for paragraphs (o)(2)(i) through (v) of this section and HL7 Version 3 Standard, Value Sets for AdministrativeGender and NullFlavor (incorporated by reference in § 170.299), for paragraphs (o)(2)(vi) and (vii) of this section, attributed as follows:

(i) Male. 446151000124109

(ii) Female. 446141000124107

(iii) Female-to-Male (FTM)/Transgender Male/Trans Man.407377005

(iv) Male-to-Female (MTF)/Transgender Female/Trans Woman.407376001

(v) Genderqueer, neither exclusively male nor female.446131000124102

(vi) Additional gender category or other, please specify. nullFlavor OTH

(vii) Choose not to disclose. nullFlavor ASKU

US ONC Interoperability Standards Advisory (ISA) Sex and Gender

• Representing Patient Gender Identity

• Representing Patient Sex (At Birth)

• Representing Patient-Identified Sexual Orientation

The American Clinical Laboratory Association (ACLA)

has developed a Best Practice Recommendation for administrative sex and clinical patient gender used for laboratory testing and reporting. From the ONC ISA:

http://www.acla.com/acla-best-practice-recommendation-for-administrative-and-clinical-patient-gender-used-for-laboratory-testing-and-reporting/

All Sex and Gender Value Sets currently in PHIN VADS are included in the spreadsheet below:

See Table 5 in "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"

National Park Service: Department of Interior - LGBTQ America - outlines SEXUAL AND GENDER DIVERSITY IN NATIVE AMERICA AND THE PACIFIC ISLANDS here

Gender Identity Terms:

• Two-spirit Male
• Two-spirit Female

Added 2019-06-28

See the article Electronic medical records and the transgender patient: recommendations from the World Professional Association for Transgender Health EMR Working Group uploaded here. Provided by

Manisha Khatta
Consultant | Government & Public Services (GPS)
Deloitte Consulting LLP

Attached is the article I was referencing. It includes:
-the hemoglobin scenario
-the conceptual idea of linking gender identity to birth sex
-identifying pronoun data collection, organs for inventory, and common treatments and procedures

Hopefully the references will include other helpful information, from social to EHR perspective!

added 2019-07-01

Deutsch et al. EHR and transgender patients. JGIM 2014;30(6):843-7 -> proposed gender ID: male; female; transgender male/man or transman; transgender female/woman or transwoman; genderqueer/gender nonconforming; other gender identity (in table 1 on p846)

Added 2019-07-02

Uploaded article: Safer JD, Tangpricha V. Care of the Transgender Patient. Ann Intern Med. 2019;171(1):ITC1-ITC16. doi:10.7326/AITC201907020.

Added 2019-07-25

C-CDA Examples task force created Sexual Orientation Gender Identity example template. 

Added 2019-07-26

AMA IHMI SDOH ICD-10 Z codes that apply to any Social Determinants of Health

Added 2019-07-29

From Unknown User (rjhorn) the Australian Government approach has a "Sex" value and a "Gender" value and each can have only one of three values: M, F, X. Only Gender is mandated for capture. 

Added 2019-12-16

From Robert Horn - Added DICOM Sex-Gender attributes change proposal draft