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  1. Other Specification Feedback
  2. OTHER-2452

Sex diagnosed at birth or infancy

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    • Icon: Change Request Change Request
    • Resolution: Not Persuasive with Modification
    • Icon: Highest Highest
    • Cross Paradigm Gender Harmony - Sex and Gender Representation (OTHER)
    • 1.0.0-ballot
    • Terminology Infrastructure
    • STU
    • Model
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      Describing the patient's anatomical sex at birth can be done using a Sex Parameter for Clinical Use, with a period indicating it was captured at (or around) the birth of the child.  That same determination may also be communicated as the Sex Assigned at Birth, though the Sex Assigned at Birth often is associated with the birth certificate, and may have legal connotations that different from the clinical observations. The preferred international approach is to use SPCU associated with Patient, or possibly a relevant delivery episode. If Sex Assigned at Birth is in a profile relevant to your use case and jurisdiction (e.g. US Core uses an extension on Patient), use of that profile.

      The GHP will place guidance in an Implementations Considerations page grouped with other guidances such as Design Considerations. The GHP will also include an SPCU example in a use case.

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      Describing the patient's anatomical sex at birth can be done using a Sex Parameter for Clinical Use, with a period indicating it was captured at (or around) the birth of the child.  That same determination may also be communicated as the Sex Assigned at Birth, though the Sex Assigned at Birth often is associated with the birth certificate, and may have legal connotations that different from the clinical observations. The preferred international approach is to use SPCU associated with Patient, or possibly a relevant delivery episode. If Sex Assigned at Birth is in a profile relevant to your use case and jurisdiction (e.g. US Core uses an extension on Patient), use of that profile. The GHP will place guidance in an Implementations Considerations page grouped with other guidances such as Design Considerations. The GHP will also include an SPCU example in a use case.
    • Rob McClure / Davera Gabriel : 5-0-0
    • Enhancement
    • Non-substantive

      Please add profiling to encode sex at birth (e.g., as sex diagnosed at birth or infancy,  sex identified in infancy, or as an observed SFCU in infancy). Sex at birth is a proxy reference for other variables, and necessary for proper treatment throughout a patient's lifetime (esp. in the domains of neurology and cardiology).

      For example:

      https://www.valleyhealthlink.com/patients-visitors/for-patients/mychart/importance-of-documenting-sex-at-birth-in-medica/

      https://www.patientcare.va.gov/LGBT/docs/FAQ-BirthSex-SelfIdentifiedGenderIdentityFactSheet.pdf

      Sex at birth should also be supported for backwards compatibility. Machine processing algorithms, like EKG signal processing, that have evolved over the past 40 years, rely on a binary deterministic representation of sex. Since a consensus method to determine SFCU has not yet been established, it is not yet clear if SFCU can be applied in a consistent manner to meet the essential performance needs of such algorithms. In the meantime, many established algorithms rely on sex at birth.

            Unassigned Unassigned
            steven_nichols Steven Nichols
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              Updated:
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