Data Element

Comment

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.

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.

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) 

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/

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

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
 

CDC's Consolidated Comment

Gender Identity

  • Addressing health equity tasks through the USCDI in a scope of the SOGI, the USCDI should contain 5 data elements (Gender Identity, Sex assigned at birth, Sexual Orientation, Sex for Clinical Use Note and Patient Pronoun). The last two mentioned data elements were not included into the v.3. We recommend including the Sex for Clinical Use Note (within the Clinical Notes data class) and Patient Pronoun (within the Patient Demographic) into the next, the USCDI v.4 version.
  • We propose adding the LOINC code 76691-5, Gender Identity, for the Gender Identity question (it was missed in the current v.3)
  • We suggest updating the value set for Gender Identity responses that has been already included into the Gender Identity data elements by ONC in v.3. Specifically, we suggest adding two more values: Non-Binary (SNOMED 772004004) and Two-Spirit that refers to a person who identifies as having both a masculine and a feminine spirit and is used by some Indigenous people to describe their sexual, gender and/or spiritual identity.

CSTE Comment:

  • 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 the designation 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)

 

 

Log in or register to post comments

Add a New Comment

Review comment and Submit

Edit
Data Element #1
doc, docx, pdf
Max Size : 10 MB
doc, docx, pdf
Max Size : 10 MB