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  1. Other Specification Feedback
  2. OTHER-2463

Reconsider Recorded Sex and Gender definition/purpose

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    • Icon: Change Request Change Request
    • Resolution: Not Persuasive with Modification
    • Icon: Medium Medium
    • Cross Paradigm Gender Harmony - Sex and Gender Representation (OTHER)
    • 1.0.0-ballot
    • Terminology Infrastructure
    • STU
    • Recorded Sex or Gender [deprecated]
    • Hide

      Update the RSG model definition in the GHP IG to include the content drafted here: 

      https://docs.google.com/document/d/1feAyoUqRXp_LrydhrXc6NFHvOOk8inV0g9ysEw2FhV4/edit

      Text as follows:

      Recorded Sex or Gender (RSG)

      Recorded Sex or Gender information may originate from a physical or electronic document that was provided to a medical provider. This information may also originate from fields in medical systems that were initially populated using those documents, or via patient attestations.  The rules for collection of these documents and fields have varied significantly over time and place therefore  the relationship to current Gender Identity or Sex Parameters for Clinical Use may be unclear. 

      The RSG element includes source information so that the definition of “X” in a driver’s license can be found if necessary and the jurisdiction can be recorded. The RSG also includes an internationally equivalent code to reduce the problems with unfamiliar sources. The original medical record source can provide an equivalent international code when it has one.

      Definition: Recorded sex or gender (RSG) information includes the various sex and gender concepts that are often used in existing systems but are not known to represent a gender identity, sex parameter for clinical use, or attributes related to sexuality, such as sexual orientation, sexual activity, or sexual attraction. Examples of recorded sex or gender concepts include administrative gender, administrative sex, and sex assigned at birth.

       

      Usage Note: If a medical system needs to exchange a single internal field labeled “sex” which, over time, has been used to capture both sex and gender, recorded sex or gender may be an appropriate way to exchange such data. 

      Sex assigned at birth (SAAB), while very common in some jurisdictions, is considered a recorded sex or gender. 

      Guidance: When evaluating when and how to exchange sex or gender concepts, consider whether Gender Identity or Sex Parameters for Clinical Use may be better for the relevant use case.  If those concepts are not appropriate or available, then the following approach for exchanging Recorded Sex or Gender may be used:

      1. Determine which sex or gender concept is relevant for the jurisdiction and use case.  For example, you might identify concepts such as:
      • Sex Assigned at Birth
      • For clinical purposes, consider whether Sex Parameters for Clinical Use may more accurately represent the patient’s relevant clinical status.   
      • Sex Assigned at Birth may not reflect current clinical attributes of adults.
      • Understand that the Sex Assigned at Birth value in medical systems may not be the value recorded on the birth certificate at the time of birth due to operational and training issues around its collection.
      • Administrative Sex/Gender
      • For the purpose of communicating with a patient, consider whether Gender Identity may be more appropriate.
      • Legal Sex/Gender
      • Billing Sex/Gender
      • Etc.
      1. Determine the best way to exchange this information between systems.  This could involve:
      • Using existing fields, such as:
      • Patient.gender in FHIR
      • PID-8, GT1-9, NK1-15 in HL7v2
      • Birth Sex Observation template or Patient.administrativeGenderCode in CDA
      • Creating jurisdiction or use case specific structures that are directly tied to the specific concept being exchanged, such as:
      • New jurisdictional or use case specific extensions for FHIR
      • us-core-birthsex
      • ukcore-birthsex
      • New template for CDA
      • Using a generic structure
      • The individual-recordedSexOrGender FHIR extension if available for the context in question
      • A FHIR Observation resource
      • OBX or GSR segments in HL7v2
      • Observation template in CDA
      Show
      Update the RSG model definition in the GHP IG to include the content drafted here:  https://docs.google.com/document/d/1feAyoUqRXp_LrydhrXc6NFHvOOk8inV0g9ysEw2FhV4/edit Text as follows: Recorded Sex or Gender (RSG) Recorded Sex or Gender information may originate from a physical or electronic document that was provided to a medical provider. This information may also originate from fields in medical systems that were initially populated using those documents, or via patient attestations.  The rules for collection of these documents and fields have varied significantly over time and place therefore  the relationship to current Gender Identity or Sex Parameters for Clinical Use may be unclear.  The RSG element includes source information so that the definition of “X” in a driver’s license can be found if necessary and the jurisdiction can be recorded. The RSG also includes an internationally equivalent code to reduce the problems with unfamiliar sources. The original medical record source can provide an equivalent international code when it has one. Definition: Recorded sex or gender (RSG) information includes the various sex and gender concepts that are often used in existing systems but are not known to represent a gender identity, sex parameter for clinical use, or attributes related to sexuality, such as sexual orientation, sexual activity, or sexual attraction. Examples of recorded sex or gender concepts include administrative gender, administrative sex, and sex assigned at birth.   Usage Note: If a medical system needs to exchange a single internal field labeled “sex” which, over time, has been used to capture both sex and gender, recorded sex or gender may be an appropriate way to exchange such data.  Sex assigned at birth (SAAB), while very common in some jurisdictions, is considered a recorded sex or gender.  Guidance : When evaluating when and how to exchange sex or gender concepts, consider whether Gender Identity or Sex Parameters for Clinical Use may be better for the relevant use case.  If those concepts are not appropriate or available, then the following approach for exchanging Recorded Sex or Gender may be used: Determine which sex or gender concept is relevant for the jurisdiction and use case.  For example, you might identify concepts such as: Sex Assigned at Birth For clinical purposes, consider whether Sex Parameters for Clinical Use may more accurately represent the patient’s relevant clinical status.    Sex Assigned at Birth may not reflect current clinical attributes of adults. Understand that the Sex Assigned at Birth value in medical systems may not be the value recorded on the birth certificate at the time of birth due to operational and training issues around its collection. Administrative Sex/Gender For the purpose of communicating with a patient, consider whether Gender Identity may be more appropriate. Legal Sex/Gender Billing Sex/Gender Etc. Determine the best way to exchange this information between systems.  This could involve: Using existing fields, such as: Patient.gender in FHIR PID-8, GT1-9, NK1-15 in HL7v2 Birth Sex Observation template or Patient.administrativeGenderCode in CDA Creating jurisdiction or use case specific structures that are directly tied to the specific concept being exchanged, such as: New jurisdictional or use case specific extensions for FHIR us-core-birthsex ukcore-birthsex New template for CDA Using a generic structure The individual-recordedSexOrGender FHIR extension if available for the context in question A FHIR Observation resource OBX or GSR segments in HL7v2 Observation template in CDA
    • Rob McClure / Davera Gabriel : 5-0-0
    • Clarification
    • Non-substantive

      I'm having second thoughts on RSG...

      I'm not sure I've met two people that had the same understanding of RSG.  Even within the GHP group, I don't think we have a consistent understanding of what it means (as evidenced by the USCDI discussions).

       

      I think there are a few reasons for this:

      • Having the definition be anything that is NOT GI or SFCU is not really a good definition.  
      • Having a definition based on original documents doesn't seem realistic.  Most health IT systems don't really record document info, and don't need to.
      • The examples we've used during GHP discussion (driver's license, birth certificate, etc.) aren't real-world examples of how information is collected (as far as I know).  They were useful examples for us to think through the concepts, but we might re-orient our thoughts on RSG around concepts that actually are collected and exchanged today.

       

      I think we should revisit RSG overall.  At a minimum, consider a more clear and concise definition.

       

            cooper.thompson Cooper Thompson
            cooper.thompson Cooper Thompson
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