Use Case Description:
An intersex individual enters a medical setting and indicates that they've had intersex genital mutilation performed in the past, being reassigned a gender twice, and many medical records have been lost. The intake form asks a two-step question of gender identity and assigned sex at birth. The assigned sex at birth only allows entering one datum (and must be answered for site compliance), and says it is synonymous the individual's birth certificate. They have 3 issued birth certificates, one at birth 'M', one in childhood 'F', and one in adulthood 'M'. They have one gender identity, so there is no issue with the gender identity question. |
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Actors:
Intake Personnel - Individual who searches for and catalogues the individual records for the purposes of accurate caregiving. Patient - Individual presented with multiple conflicting records which don't fit into the intake form questions, which may be required for site compliance. Provider - Individual providing care to the patient. |
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Scope Statement:
| This use case includes conflicting documentation, which could not be recorded accurately using a single-value system (as currently with Administrative Sex), but could be recorded with multi-value systems like Sex For Clinical Use and Record Sex or Gender. |
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Precondition(s):
| Patient has multiple birth certificates. |
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Postcondition(s):
| Patient has each Recorded Sex or Gender datum recorded, and, optionally, has Sex For Clinical Use(s) decided upon after consultation with the provider. |
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Workflow/Storyboard:
1. Patient approaches the Intake Personnel asking about how to record their situation, with multiple birth certificates, and how this fits into the single-value "assigned sex at birth" question. The Intake Personnel has the individual write out the situation in a free-space on the form and integrates that into the record as multiple Recorded Sex or Gender datums. 2. The provider engages with the patient to ask what might be appropriate if treatment options may consider particular gender- and/or sex-related data (such as reference ranges), as the multiple Recorded Sex or Gender datums indicates that there isn't one single value. Organ and/or genetic screening may be necessary and should involve patient consent to such screenings, for Sex For Clinical Use datums. |
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Alternative and/or related Workflow(s):
Alignment and/or Misalignment with Gender Harmony Model:
| This takes advantage of the new multiplicity of Recorded Sex or Gender in the Gender Harmony Model. Current systems (not using the Gender Harmony Model) cannot adequately record these data. |
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Current Standard Support:
- HL7 V2.x
| V2.x Resource: Administrative Gender in the PID segment (the whole segment has to be looked at; more than just updating Administrative Gender; may constitute a new segment). |
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- HL7 V3
| V3 Resource: Still uses Administrative Gender, but may have different values in the value set. Definitions are also aligned with HL7 V2.x. |
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- HL7 FHIR
| FHIR Resource: Person (Patient is a subset of Person). Person.Gender / Patient.Gender (required binding to Administrative Gender). There will need to potentially be updating to support more specific value types, such as Recorded Sex or Gender. |
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- DICOM
| DICOM Resource: Affects the Patient module; there is no sex or gender datum on Person, only on Patient. |
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- NCPDP
| NCPDP Resource: Currently uses the optional field of "Sex Assigned At Birth" (F32-W8), only when it differs from the "Patient Gender Code" (305-C5). If multiple assigned sex at birth datums (in Recorded Sex or Gender format) exist, there will need to be discussions concerning how to coerce into a single value or expand to allow multiple values. |
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- X12
| X12 Resource: Only calls out the Gender Code itself. If multiple assigned sex at birth datums (in Recorded Sex or Gender format) exist, there will need to be discussions concerning how to coerce into a single value or expand to allow multiple values. Currently, a 'U' value (unknown) is used to handle these situations. |
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Other (please specify standard and resource below)
| Other: USCDI v2 "Sex (Assigned at Birth)" in Patient Demographics seems to be a single value. If multiple assigned sex at birth datums (in Recorded Sex or Gender format) exist, there will need to be discussions concerning how to coerce into a single value or expand to allow multiple values. |
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