Skip to end of metadata
Go to start of metadata

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:

code

description

M

male

F

Female

S

other

U

unknown

Canadian Institute for Health Information (CIHI)

SEX AND GENDER DATA IN SELECT CIHI DATABASES

Data HoldingData LabelDefinitionConcept Intended to CapturePermissible Values (Variables)
Canadian Patient
Experiences Survey
GenderA code used to indicate the
gender of the patient
GenderMale
Female
Other
Unknown
Discharge Abstract DatabaseGender

The sex of the patient

Gender is one alpha character describing the sex of the patient

SexM = Male
F = Female
U = Undifferentiated (stillbirths only)
O = Other or unknown
Home Care Reporting SystemSex
Sex

M = Male

F = Female


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

ConstructDefinitionAttributesPermissible Values
Sex at BirthA code that identifies the category assigned to an individual at
birth that is typically based on their reproductive system and
other physical characteristics.
(Reference: Statistics Canada)

M = Male
F = Female
I = Indeterminate (includes intersex or cannot be uniquely
identified or classified as male or female at birth)
UNK = Unknown (includes not stated, not recorded, a value is
applicable but not known)
Gender

A code that refers to the socially constructed roles,
behaviors, identities and expressions of girls, women, boys,
men and gender diverse people by a given society
(Reference: Canadian Institutes of Health Research).


Attributes based on Gender:

Gender Identity: is each person’s internal and individual
experience of gender. It is their sense of being a woman, a
man, both, neither, or anywhere along the gender
spectrum. A person’s gender identity may be the same as or
different from their birth-assigned sex (Reference: Ontario
Human Rights Commission).
Lived Gender: is how a person publicly presents their
gender. This can include behavior and outward appearances,
person’s chosen name and pronoun (Reference: Ontario
Human Rights Commission).
Note: CIHI data holdings may decide what construct of
gender to capture based on their business requirement

M = Male
F = Female
D = Gender Diverse (includes persons who reported their
gender as being other than male or female. It includes
persons who reported being unsure of their gender, being both
male and female, or neither male nor female)
UNK = Unknown (includes not stated, not recorded, a value is
applicable but not known)
NA = Not Applicable (includes if question is not appropriate to ask eg., inappropriate to ask children)


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:

new German law

description

comment

W  

"Female"

 

M  

"male"

 

D  

"divers"

 

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:

description

v2.x code

V3 code

FHIR code

comment

male

M

M

times

 

Female

F

F

female

 

not differentiated

-  

U.N.

-  

 

unknown

U

zero flavor = "UNK"  

unknown  

in HL7 V3 this is communicated as nullFlavor

other  

O  

-  

other  

in v2 only for veterinary medicine

ambiguous

A

-  

-  

in v2 only for veterinary medicine

not applicable  

N

-  

-  

in v2 only for veterinary medicine

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:

code

description

comment

M

male

earlier 0

W

Female  

earlier 1

X

undetermined

previously not available

U

unknown

earlier 2

*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

CodeDescriptionDefinition
ANot Provided
BNot Applicable
FFemale
INonbinary
MMale
NNon-sexed

Gender is not known because observation or examination for such was not recorded or requested by the protocol

TSelf-reported as Transgender
UUnknown
XUnsexableGender could not be determined because of ambiguity in external or internal genitalia

*USHIK HITSP

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

CodeDescription
MMale
FFemale
UUnknown

*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

CodeDescription
MMale
FFemale
UUnknown

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

CodeDescription
MMale
FFemale
UUnknown

*NCPDP

Gender

Specified in a couple of places

Code v.51+Code v.50-Description
M1Male
F2Female
U0 or blankUnknown

0Not specified

*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

(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


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"

Gender Identity (N = 11 639)a 
 Genderqueer 1931 (16.6) 
 Man 3831 (32.9) 
 Transgender man 1133 (9.7) 
 Transgender woman 560 (4.8) 
 Woman 5165 (44.4) 
 Another gender identity 1238 (10.6) 
Sex Assigned at Birth (N = 10 941) 
 Female 7094 (64.8) 
 Male 3847 (35.2) 
Sexual Orientation (N = 11 630)b 
 Asexual 1018 (8.8) 
 Bisexual 3194 (27.5) 
 Gay 4002 (34.4) 
 Lesbian 2804 (24.1) 
 Pansexual 2018 (17.4) 
 Queer 4154 (35.7) 
 Questioning 392 (3.4) 
 Same-Gender Loving 693 (6.0) 
 Straight 245 (2.1) 
 Another sexual orientation 398 (3.4) 
Gender Minorityc (N = 11 639) 3813 (32.8) 
Sexual Minorityd (N = 11 630) 11 476 (98.7) 
Sexual and Gender Minority (N = 11 623) 3677 (31.6) 


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. 

  • No labels

1 Comment

  1. Unknown User (rjhorn)