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  1. FHIR Specification Feedback
  2. FHIR-39246

Gender identity as self-reported vs. reported by proxy

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    • Icon: Change Request Change Request
    • Resolution: Persuasive with Modification
    • Icon: Highest Highest
    • FHIR Core (FHIR)
    • R5
    • Patient Administration
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      Our suggestion is to use Provenance, with a target reference to the Patient resource, and a targetElement referencing the gender identity extension.  This approach is not unique to gender identity, however, as the same approach can be used for other demographics like race and ethnicity.

       

      We will update the definition narrative for the individual-genderIdentity extension with the following language:

       

      An individual's personal sense of being a man, woman, boy, girl, nonbinary, or something else. This represents an individual’s identity, ascertained by asking them what that identity is.  
       
      In the case where the gender identity is communicated by a third party, for example, if a spouse indicating the gender identity of their partner on an intake form, a Provenance resource can be used with a Provenance.target referring to the patient, with a targetElement extension identifying the gender identity extension as the target element within the Patient resource.

      https://build.fhir.org/extension-targetelement.html

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      Our suggestion is to use Provenance, with a target reference to the Patient resource, and a targetElement referencing the gender identity extension.  This approach is not unique to gender identity, however, as the same approach can be used for other demographics like race and ethnicity.   We will update the definition narrative for the individual-genderIdentity extension with the following language:   An individual's personal sense of being a man, woman, boy, girl, nonbinary, or something else. This represents an individual’s identity, ascertained by asking them what that identity is.     In the case where the gender identity is communicated by a third party, for example, if a spouse indicating the gender identity of their partner on an intake form, a Provenance resource can be used with a Provenance.target referring to the patient, with a targetElement extension identifying the gender identity extension as the target element within the Patient resource. https://build.fhir.org/extension-targetelement.html
    • Brian Postlethwaite / Rob McClure : 7-0-3
    • Clarification
    • Non-substantive
    • R5

    Description

      As proposed, the representation of Gender Identity does not allow for the source of that information to be a proxy in situations where the patients themselves are unable to communicate their Gender Identity. Understanding that representations of the provenance and qualifications needed for the collection of sex and gender identity information is out of scope for this project, CSTE would like to recognize the need for the collection of Gender Identity by proxy and acknowledge that this is a gap in the framework as currently proposed. CSTE requests that this important new scope be addressed in the next release or in this release, if possible.

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            Unassigned Unassigned
            shaily_krishan Shaily Krishan
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