A person’s internal sense of being a man, woman, both, or neither.
Applicable Vocabulary Standard(s)
Applicable Standards
Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT®) U.S. Edition, March 2022 Release
Submitted By: A. Taylor
/ ONC
Data Element Information
Rationale for Separate Consideration
It is important for healthcare providers and staff to record patients’ administrative sex and gender identity separately and accurately. Although administrative sex may affect gender-specific care (e.g., mammograms), a patient's gender identity may also affect care and health outcomes. For example, transgender patients are known to face health disparities, and lack of adherence to preferred names and pronouns can lead to embarrassment and even discrimination in healthcare.
Use Case Description(s)
Use Case Description
Technical outcome – A user can record a patient’s gender identity according to HL7® FHIR R4, HL7® version 3, SNOMED CT®, and LOINC codes specified in the “standard(s) referenced” column. The user must be able to record whether the patient declined to specify gender identity. Note that while gender identity was included in the 2015 Edition “demographics” certification criterion and the 2015 Edition Base EHR definition, it was not included in the Common Clinical Data Set definition. This means that gender identity is not required to be exchanged using certain standards, only that systems enable a user to record, change, and access gender identity. [see also 80 FR 62619].
Estimate the breadth of applicability of the use case(s) for this data element
Users of the 572 certified health IT products, out of 901 total products certified to ONC's 2015 Edition, that successfully tested to the 170.315(a)(5) demographics certification criterion has the ability to record, change, and access gender identity data within these products.
This data element has been used at scale between multiple different production environments to support the majority of anticipated stakeholders
Extent of exchange
N/A
Potential Challenges
Restrictions on Standardization (e.g. proprietary code)
While it is required under the 2015 Edition 170.315(a)(5) demographics certification criterion to be able to record, change, and access gender identity data, it is not required for exchange. One restriction may be the ability to restrict exchange based on patient consent by element.
Restrictions on Use (e.g. licensing, user fees)
None known
Privacy and Security Concerns
Potential concern due to limited capacity to capture and enforce patient consent by element across the industry at this time.
Estimate of Overall Burden
Already implemented for record, change, and access, but not for exchange.
The HL7 Gender Harmony (GH) project today voted to make the following concepts the MINIMUM set of concepts that all GH-conformant systems SHALL support when representing Gender Identity:
From SNOMED CT (International edition in May release, currently in US and Canadian editions):
We want to stress that these concepts are rarely expected to be the only allowed values for systems capturing and representing gender identity. For example the codes currently in the USCDI proposed set can be added to this list. It should be noted that it is our recommendation that systems should not "roll up" concepts they may collect or receive into these minimum values. Each gender identity should be considered unique and independent in meaning. We also expect that addition Null-type codes will be of value in specific systems and requirements, such as USCDI. The GH project will be creating a value set with this minimum set in the near future.
Recommend adding Non-Binary (NCPDP Definition: An umbrella term for people with gender identities that fall somewhere outside of the traditional conceptions of strictly either female or male) as a valid value for Gender Identity to align with the values defined by NCPDP. NCPDP also recommends adding Pronouns (NCPDP Definition: A set of pronouns an individual would like others to use when talking to or about that individual) using the LOINC codes to align with NCPDP identifiers defined.
The options here should be in-line with those discussed by clinicians and researchers here: https://doi.org/10.1093/jamia/ocab136.
Additionally, culturally-specific gender identities such as Two-Spirit, Palao'ana, and Māhū should be included given their specific usage in the United States.
Doing this is in-line with best practices and with the HL7 Gender Harmony Project.
The terms Female-to-Male and Male-to-Female listed here are obsolete and inappropriate. The terms transgender woman, trans woman, transgender man, and trans man are accurate descriptors of medical history but not of gender directly. Binary trans women and men may be correctly identified simply as women and men, without separate categories, and nonbinary trans people as nonbinary. It is widely recognized that listing trans women and trans men as separate categories from women and men results in a harmful and incorrect understanding that binary trans people are not "real" women and men.
The "female to male" and "male to female" terms listed here are obsolete and reflect a transphobic attitude toward trans people. Trans men are men; trans women are women. Their gender identities may be distinct from their status as being trans. It is widely recognized that listing trans women and trans men as separate categories from women and men results in a harmful and incorrect understanding that binary trans people are not "real" women and men.
I would also advocate for inclusion of further categories beyond "Genderqueer". I am nonbinary and agender, and my gender identity is categorically different from that of many other people who could also fall under the umbrella term "genderqueer". Without ways to accurately represent people with diverse gender identities, we lose important information about who Americans are, and what outcomes and experiences people with different genders face. The list of options presented should capture the most information possible while still being accurate, respectful and inclusive.
This question currently does not but should follow the best practices developed in the literature (e.g. https://academic.oup.com/jamia/article/29/2/271/6364772). As a trans person myself, I would select female over the “MTF/transgender female/trangender woman” and I think many people feel the same, so why then is it an option? This way of asking the question implies that transgender women are not “female.” Instead, just ask gender identity (e.g. male, female, non-binary/genderqueer, other, prefer not to reply) and gender assigned at birth (e.g. Male, female, X, prefer not to say) as two separate questions, and then transness can be inferred. Additionally, explicitly including "non-binary" as opposed to just having "genderqueer, neither exclusively ..." as a category would be in line with the best practices as laid out in the literature.
The terms Female-to-Male and Male-to-Female listed here are obsolete and inappropriate. The terms transgender woman, trans woman, transgender man, and trans man are accurate descriptors of medical history but not of gender directly. Binary trans women and men may be correctly identified simply as women and men, without separate categories, and nonbinary trans people as nonbinary. It is widely recognized that listing trans women and trans men as separate categories from women and men results in a harmful and incorrect understanding that binary trans people are not "real" women and men. Please see https://academic.oup.com/jamia/article/29/2/271/6364772 for further discussion.
FTM and MTF are outdated and unnecessary terms, as man/male and woman/female convey the gender of the individual. Additionally, as cis and trans individuals often have the same gender (man or woman), it is redundant and will lead to underestimates of trans individuals who select terms like male/female rather than transgender male/transgender female. This publication can be referenced https://academic.oup.com/jamia/article/29/2/271/6364772. One improvement would be to utilize a two-step question process integrated with assigned sex to determine gender, sex, and gender modality (transgender or cisgender). Another option would be to have multiple selections available, so that an individual can choose a gender and gender modality from the same question's answer choices. This would also accommodate individuals with genders encompassing multiple terms, such as bigender/two-spirit respondents who may want to select multiple gender options.
Revise the data element definition as the following:
Gender identity is an individual's personal sense of being a man, woman, or other gender, regardless of the sex that person was assigned at birth. It should be noted that Gender Identity is something that is expressed by an individual, is not assigned by any other entity (i.e., parent) or clinician.
Revise applicable to the Data Element vocabulary standards as the following:
Gender identity (question). LOINC® code: 76691-5.
List of answers: Findings related to development of sexuality (finding), SNOMED CT ® Code 285116001:
My sense of personal identity and gender corresponds with my birth sex (cisgender), PHIN VADS PHC1490
Identifies as female-to-male transgender (finding) SNOMED CT ® 407377005
Identifies as male-to-female transgender (finding), SNOMED CT ® 407376001
Identifies as non-conforming gender (SNOMED CT (US) synonyms include: Genderqueer;
Identifies as neither exclusively male nor female, Non-binary gender) SNOMED CT® code: 446131000124102
Identifies as Other, HL7 version 3 Null Flavor code OTH or SNOMED CT ® 74964007, Other (qualifier value)
Choose not to disclose, HL7 version 3 Null Flavor code ASKU, Asked but unknown
Gender identity defined in USCDI v2 does not represent all different gender identities expressed by the community as a whole. There are additional gender identities that could not be categorized in any of the values existing in the current version. For example – there are community members identifying themselves as ‘Transgender’ rather than either ‘Male Transgender’ or ‘Female Transgender’. Similarly, there are additional categories that are presently represented by ‘other’ which accurately represents additional gender identities, as follows:
Submitted by rmcclure on
HL7 Gender Harmony Project Gender Identity value set
The HL7 Gender Harmony (GH) project today voted to make the following concepts the MINIMUM set of concepts that all GH-conformant systems SHALL support when representing Gender Identity:
From SNOMED CT (International edition in May release, currently in US and Canadian editions):
446141000124107 Identifies as female gender (finding) 446151000124109 Identifies as male gender (finding) 33791000087105 Identifies as nonbinary gender (finding)And also from the HL7 Null Flavor code system:
UNK Unknown
We want to stress that these concepts are rarely expected to be the only allowed values for systems capturing and representing gender identity. For example the codes currently in the USCDI proposed set can be added to this list. It should be noted that it is our recommendation that systems should not "roll up" concepts they may collect or receive into these minimum values. Each gender identity should be considered unique and independent in meaning. We also expect that addition Null-type codes will be of value in specific systems and requirements, such as USCDI. The GH project will be creating a value set with this minimum set in the near future.