Use Cases

Just think it might be useful to have some use cases here.

• Recorded Gender Finding
  • Provider needs gender with primary health insurance provider, which is different from gender data indicated in other fields
  • Patient has two health insurance providers and has a different gender registered with both of them
  • Patient is asked what their gender marker is on their original birth certificate
    • Due to laws in some countries (such as Germany), the birth certificate provided shortly after birth is destroyed following legal gender change. Therefore the "new" birth certificate is backdated to birth and is functionally the original birth certificate. Therefore this value may be different than assigned gender and/or sex at birth.
  • Patient is unconscious but has a driver's license with a gender value on it.
  • Patient is unconscious but has 2 form of identification on them with different gender values on them (for instance, a passport and a driver's license).
  • Provider needs to confirm patient informational before surgery and asks their gender: the patient asks whether they want gender marker with health insurance, gender marker on driver's license, their gender identity, or their assigned sex at birth, which may all be different.
• Gender Assignment Finding
  • Patient is asked their assigned gender at birth, they are not sure or do not understand the question.
  • An adult individual from an uncontacted and isolated Amazon tribe comes into a hospital and has never been assigned a gender, but the provider asks what their assigned gender is. The assignment is not at birth, but in adulthood.
• Gender Identity Finding
  • Patient identifies as a nonbinary woman.
  • Patient indicates that they identify as male and Two-Spirit.
  • Patient is uncertain or is questioning their gender identity.
  • Patient is uncomfortable talking about their gender identity.
  • Patient expresses different gender identity-related information based on comfort and/or safety level.
  • Provider is trying to enter a gender identity for a fetus.
  • Provider is trying to enter a gender identity for a neonate/infant.
  • Patient indicates that their gender identity changes based on various factors.
  • Patient refuses to disclose their gender identity for any reason.
  • Patient is unconscious and unresponsive and cannot be asked for their gender identity.
• Sex Assignment Finding
  • Patient has no gender assignment at birth (i.e. they have no birth certificate or birth-related documentation), but the doctor who was present at the birth assigned a sex datum.
  • Patient is intersex.
  • Patient is not intersex.
• Sex For Clinical Use Finding
  • Current equipment is often built on male/female- or male/female/complex-themed systems, algorithms, and/or reference values. Therefore mappings need to potentially be individualized based on type of equipment/test/procedure being run.
    • A growth chart in a pediatric facility requires either an "F" or an "M"
  • Patient is unconscious, unclothed, and has no documentation, but their genital anatomy can be seen visually.
  • Patient cannot be communicated with, but a hormone panel indicates testosterone levels in expected "male" levels for a given age group.
  • Patient cannot be communicated with, but their karyotype and/or genetic information is available.
  • A second autopsy based only on bone evidence is performed; the second coroner disagrees on the sexing of the skeleton, but it is unclear how the first coroner came to the conclusion they did and the first coroner cannot be reached for comment
• Pronouns Finding
  • Patient utilizes more than one pronoun set
  • Patient does not speak English and does not understand the pronoun question
  • Patient is too young to understand when asked for pronouns
  • Patient cannot be communicated with, but a relative and/or legal guardian specifies their pronouns; however, it cannot be certain that they've specified the correct pronouns and the intent may or may not be malicious

Some cases to consider:

• Patient is a trans man and indicates their gender identity is male and their assigned gender at birth was female.
• Patient is a trans woman and indicates their gender identity is female and their assigned gender at birth was male.
• Patient is nonbinary and indicates their gender identity as such. They refuse to indicate their assigned gender at birth.
• Patient is a guevedoche and was assigned a female gender at birth but expresses that they identify as male.
• Patient is assigned male at birth but presents with severe abdominal pains. It is found that they have a fused vaginal/anal canal and are pregnant. Emergency C-section is required.
• Patient is a trans man who presents with severe abdominal pains and is found to be pregnant.
• Patient was assigned male at birth during the period wherein micropenile tissue was typically removed and the patient was reassigned female at birth during infancy/childhood. The previous provider destroyed much of this information, so the full history is uncertain. Patient is severely distressed by this and later transitions to male (as they have always identified as such).
• Patient is a hijra living in India and identification as such is appropriate in some situations, but can end in death in others.
• Patient identifies as a khwaja sira in Pakistan, and finds the term hijra extremely offensive.
• Patient is identified by the parent/guardian as male, but the patient identifies to the provider as female.
• Patient was born into a family of all girls and was assigned female at birth; however, he was chosen by his parents to live as a bacha posh for reasons of safety and opportunity and therefore identifies as a boy, but not in the sense of transitioning as such.
• Patient is a burrneshë, being assigned female at birth and raised as such, but later essentially becomes an honorary male in Albanian/Montenegrin society following a vow of chastity.
• Patient lives in a country wherein electronic health records are being captured and used to create "hit lists" for LGBTQIA+ people.

I'll add more as I think of them!

Wow Clair, this is an excellent start to defining the different types of use cases for when certain sex, gender and sexuality terms should be considered or not. I see each type of use case can be expanded into a full-blown rich scenario which can be very useful.

Here in Canada, Trans Care BC has created different high level clinical use case scenarios where different data elements would be considered relevant. The use cases include intake, registration, clinical encounter, prescription, lab, imaging referral, billing and research. The data elements include Name used, Pronouns, Gender, Sex assigned at birth, Admin name, Admin gender/sex, Anatomical inventory, Hormone medication inventory and Hormone reference ranges. A matrix has been created to indicate the data elements that are relevant to certain scenarios. Short user stories have also been created as narratives to describe the scenarios. You can download/view their presentation slide deck on the Infoway sex-gender working group website -see link  

If this group can decide whether these scenarios are useful and the level of detail needed, we can then go into detail to refine them. Thanks

As most of these use cases provide a substantial amount of context, how would you perceive the data being recorded in the EHR?  I do not see all of the possible variations of these use cases being instantiated as findings in SNOMED.  We need to keep the underlying information model in mind when developing terminology, so we do not try to supplant the information model by terminology alone.  

Jim Case It could be as simple as having a checkmark that all recorded values are the same (send 'F' or 'M' for everything) and if that checkmark is not checked, then what I have discussed with DICOM is that there would be a code referring to the determination of the sex for clinical use datum in orders.

So for instance, trans patient comes in, discloses that they are trans. Hormonal panels are available, anatomical inventory is available. Provider marks these on the front-end. On the back-end, the appropriate matching to the SNOMED term or other term is made and then sent to the appropriate person based on the type of procedure, etc.

For instance, if a legacy machine requires an M or F, the provider has an automated system which marks that the patient is in the 'F' reference range. The system asks the provider for confirmation, they confirm, and it gets sent out. However, if its an insurance order that system has its respective value, etc., etc.

For most cases, this would be set during a first encounter and would end up in unstructured notes anyway so it streamlines and formalizes the process, and when everything matches, you don't need to really do it at all. It's just a checkmark and done.