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 Holding | Data Label | Definition | Concept Intended to Capture | Permissible Values (Variables) |
---|---|---|---|---|
Canadian Patient Experiences Survey | Gender | A code used to indicate the gender of the patient | Gender | Male Female Other Unknown |
Discharge Abstract Database | Gender | The sex of the patient Gender is one alpha character describing the sex of the patient | Sex | M = Male F = Female U = Undifferentiated (stillbirths only) O = Other or unknown |
Home Care Reporting System | Sex | 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
Construct | Definition | Attributes | Permissible Values |
---|---|---|---|
Sex at Birth | A 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, | Attributes based on Gender: Gender Identity: is each person’s internal and individual | 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
Code | Description | Definition |
---|---|---|
A | Not Provided | |
B | Not Applicable | |
F | Female | |
I | Nonbinary | |
M | Male | |
N | Non-sexed | Gender is not known because observation or examination for such was not recorded or requested by the protocol |
T | Self-reported as Transgender | |
U | Unknown | |
X | Unsexable | Gender 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.
Code | Description |
---|---|
M | Male |
F | Female |
U | Unknown |
*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
Code | Description |
---|---|
M | Male |
F | Female |
U | Unknown |
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
Code | Description |
---|---|
M | Male |
F | Female |
U | Unknown |
*NCPDP
Gender
Specified in a couple of places
Code v.51+ | Code v.50- | Description |
---|---|---|
M | 1 | Male |
F | 2 | Female |
U | 0 or blank | Unknown |
0 | Not 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
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
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:
All Sex and Gender Value Sets currently in PHIN VADS are included in the spreadsheet below:
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) |
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
1 Comment
Unknown User (rjhorn)
Where and how should we reflect the Australian guidelines: https://www.ag.gov.au/Publications/Documents/AustralianGovernmentGuidelinesontheRecognitionofSexandGender/AustralianGovernmentGuidelinesontheRecognitionofSexandGender.pdf
These are different than the Australian standards choices.