Data Element
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 rdillaire on

CMS-CCSQ Recommend enhancing the Gender Identity data element

Data Element: Gender Identity (USCDI v5)

  1. Recommendation: Expand the Gender Identity data element definition to include the Gender Harmony Project’s minimum value set, with ISWG refinements.
  2. Rationale:CMS supports the ISWG and HITAC recommendation included in the ISWG and HITAC recommendations on Draft USCDI v3 (April 13, 2022), Draft USCDI v4 (April 12, 2023), and Draft USCDI v5 (April 11, 2024). We recommend adding the following value set from the Gender Harmony Project to USCDI v6.
  • Gender Identity
    • Female
    • Male
    • Nonbinary
    • Unknown
    • USCDI defined values:
      1. Additional gender category or other, please specify
      2. Choose not to disclose

Submitted by yale-coredQMRoadmap on

Continued CMS-CCSQ USCDIv4 Priority: Gender Identity

CMS supports the ISWG and HITAC recommendation for expanding the Gender Identity data element definition to include the Gender Harmony Project’s minimum value set, with ISWG refinements.

The additional values in the defined terminology work collectively with the sex data element to represent sex and gender diversity that supports improved care for vulnerable or underserved populations. The values for this data element are self-reported and not clinically determined, which allows for better representation of diversity.

Maturity: These elements are classified as Level 2 by ONC.

  • Current Standards:
    • CMS supports the ISWG recommended minimum value sets (https://www.healthit.gov/sites/default/files/facas/2022-04-13_IS_WG_Phase_1_Recommendations_Report_revised.pdf) from the Gender Harmony Project, along with the two USCDI values:
      • Female; Male; Nonbinary; and Unknown; Additional gender category or other, please specify; Choose not to disclose
    • HL7 Cross Paradigm IG: Gender Harmony – Sex and Gender Representation (https://build.fhir.org/ig/HL7/fhir-gender-harmony/branches/main/index.html)
  • ​​​​​​​Current uses, exchange, and use cases: Elements related to sex and gender are captured in nearly all clinical and administrative records and routinely exchanged as part of healthcare information exchange. As more appropriate and diverse terminology are standardized, the capture and exchange of the data must also keep pace to ensure appropriate and high quality of care.

Submitted by Svellanky on

CMS-CCSQ Recommendation for Gender Identity for USCDI v4

CMS supports the ISWG and HITAC recommendation for expanding the Gender Identity data element definition to include the Gender Harmony Project’s minimum value set, with ISWG refinements. The additional values in the defined terminology work collectively with the sex data element to represent gender diversity that supports improved care for vulnerable and/or underserved populations. The values for this data element are self-reported and not clinically determined, which allows for better representation of diversity. The ISWG supported the expansion of the Gender Identity data element with the Gender Harmony Project’s minimum value set in addition to the two fields from USCDI that add critical data, for which CMS supports.

Maturity: These elements are classified as Level 2 by ONC.

Current uses, exchange, and use cases: Elements related to gender are captured in nearly all clinical and administrative records. The information is routinely exchanged as part of healthcare information exchange. As more appropriate and diverse terminology are standardized, the capture and exchange of the data must also keep pace to ensure appropriate and high quality of care. CMS also uses gender information for quality measurement and continues to support Gender Harmony project efforts, reflected in this recommendation.

Submitted by nedragarrett_CDC on

CDC's comment on behalf of CSTE for USCDI v4

 

  • While more work is needed to develop public health community consensus on the best way to collect and exchange data on gender identity, and there is variability in how these data are currently collected by health care as well as by health departments, CSTE supports the use of multiple questions to describe gender identity and sex, specifically Gender Identity and Sex for Clinical Use (a category that is based upon clinical observations typically associated with thedesignation of male and female).
  • This is the recommendation of the HL7 Gender Harmony project (http://www.hl7.org/implement/standards/product_brief.cfm?product_id=564 http://www.hl7.org/documentcenter/private/standards/HL7_GENDER_R1_INFORM_2021AUG.pdf ). Sex assigned at birth as a term is controversial among members of the LGBTQ community and some individuals opt to correct or revise their sex on a birth certificate.
  • Values for gender identity should include male, female, nonbinary, exploring or questioning, another not listed (specify), choose not to disclose, and unknown. CSTE recommends that the terms transgender, female to male and transgender male to female be deprecated.
  • Values for sex for clinical use should include female, male, unknown, and something not listed (specify) 

Submitted by cmayo@med.umich.edu on

AAPM - OORO Support for GenderIdentity

The AAPM Operational Ontology for Radiation Oncology ( https://aapmbdsc.azurewebsites.net) noted several systems for identifying gender. HL7 Reference system was recommended as the primary system.

http://hl7.org/fhir/2018May/codesystem-gender-identity.html

 

Values are

  • transgender-female       
  • transgender-male          
  • non-binary         
  • male     
  • female 
  • other    
  • non-disclose     

 

Other systems evaluated were 

CDC https://phinvads.cdc.gov/vads/ViewValueSet.action?oid=2.16.840.1.113883.1.11.1

DICOM http://dicom.nema.org/medical/dicom/current/output/chtml/part16/sect_CID_7455.html#table_CID_7455

Health IT https://www.healthit.gov/isa/representing-patient-gender-identity

LOINC https://loinc.org/76691-5/

Submitted by RUy on

NACHC Gender Identity Comment

Collecting SO/GI data is essential to providing high-quality, patient-centered care for transgender people. ONC has provided good leadership on the standardization of this content in USCDIv2. FQHCs are required to collect these data for all their patients and report them to HRSA so these data are well established and are imperative to the patient-centered provision of care.

  • SO/GI data can be collected in several ways: 
  1. Information can be obtained through patient portals and transmitted to an individual’s EHR. This approach is attractive because it puts the patient in charge of defining their own identity and needs.
  2. Questions can be included on registration forms for all patients as part of the demographic section along with information about race, ethnicity, and date of birth. 
  3. Providers and their care team can ask questions during the patient visit, for instance, as part of a social or sexual-history discussion. 

NACHC believes gender identity is a foundational component of patient identity. However, it is also associated with serious health inequity and health disparities. Furthermore, it is clinically relevant to several domains of sexual health, cancer risk, trauma and interpersonal violence, substance abuse and mental health risk factors.

We strongly support the requirement for gender identity data to be captured in a standardized way in EHRs to support patients’ identities, reduce health disparities and facilitate effective clinical risk that may be modified by sexual orientation. However, NACHC proposes the modification to the gender identity value set based on work from the Gender Identity Working Group at HL7.

2022-04-30 NACHC USCDIv3 Letter of Support_11.pdf

Submitted by nedragarrett_CDC on

CDC's comment on behalf of ASTHO ( WA DOH)

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

*New values being proposed
 

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