Data used to categorize individuals for identification, records matching, and other purposes.

Data Element
Gender Identity
Description

A person’s internal sense of being a man, woman, both, or neither.

Applicable Vocabulary Standard(s)

Applicable Standards (*Please confirm or update this field for the new USCDI version*)
  • 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.
Link to use case project page https://www.healthit.gov/test-method/demographics
Healthcare Aims
  • Improving patient experience of care (quality and/or satisfaction)
  • Improving the health of populations
Maturity of Use and Technical Specifications for Data Element
Applicable Standard(s) LOINC, SNOMED CT, HL7 version 3

https://www.healthit.gov/isa/representing-patient-gender-identity
Additional Specifications https://www.hl7.org/fhir/valueset-gender-identity.html
Current Use 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.

Comment

Submitted by ravi.kafle@doh… on

Additional values in the value set

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:

  • Male
  • Female
  • Transgender Male
  • Transgender Female
  • Transgender (as non-binary)*
  • Non-binary*
  • Gender-queer
  • Two-spirit*
  • Questioning/not sure*
  • Choose not to disclose
  • Not listed, please describe*
  • Unknown

Submitted by maria.michaels… on

Promote to USCDI V2

MedMorph supports the addition of the Gender Identity element and believes it should be promoted to V2. Gender Identity is important for measuring the impact of disease and outcomes across populations. It is also beneficial in the Healthcare Survey domain since it is used to guide the provider and staff about how to interact with the patient. Also, HL7 has just completed an informative ballot: "Gender Harmony - Modeling Sex and Gender Representation, Release 1".

Submitted by rmcclure on

Gender Identity should be promoted

While I have some concerns with the sentiments noted in the "Rationale for Separate Consideration" I absolutely agree with the summary consideration that Gender Identity is a critical piece of information about people in the course of clinical care. It is distinct from other representations of sex-oriented identities, such as whatever administrative sex might be. It should be noted that Gender Identity is something that is expressed by an individual, is not assigned by any other entity (such as a parent.) Gender Identity is not something that should be used as a surrogate for physiologic sex-oriented clinical observations; instead I would like to see a separate data element that we like to call Sex For Clinical Use (SFCU). Please note that Gender Identity is NOT the element to capture information indicating if a person has gone through a transgender process, which would be best captured via clinical observations (that could properly be masked if needed.) Many transgender individuals will properly indicate Male or Female as their gender identity. 

Submitted by nedragarrett_CDC on

Recommendations for Updated Submission

We've reviewed and submitted feedback on the submission we've put forward for Patient Gender Identity, and we believe the information provided differs from the submission here, which has been referenced when told we submitted a duplicate. We believe our submission should be revisited as it differs in some areas to the submission seen here.

 

 

 

This is the data element description from the submission we've put forth:

The gender the patient identifies with. The Patient's gender identity is used as guidance (e.g. for staff) about how to interact with the patient.

Submitted by zbarber on

Gender Identity Description

The NY eHealth Collaborative (NYeC) supports including Gender Identity in the USCDI v2 due to its widespread use and clinical value for LGBTQIA individuals. We suggest revising the element description to reference the Human Rights Campaign (HRC) definition: "One's innermost concept of self as male, female, a blend of both or neither – how individuals perceive themselves and what they call themselves. One's gender identity can be the same or different from their sex assigned at birth."

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