FHIR Provenance

Provenance is used to describe the source of an information field or object.  Before digging into specifics of how it could be used for sex and gender, we should have a list of minimum necessary and reasonable use cases.  These describe in real world terms the basis of asserting a particular value for sex or gender.

Provenance Use Cases for Sex

1.       Patient Sex is <value> because the patient chose that sex during patient registration..

This is probably the most common provenance. 

2.       Patient Sex is <value> based on superficial evaluation of body hair pattern and facial bone structure. 

This is a very common provenance for unscheduled visits by accident victims, etc. where the patient is unable to respond to questions.

3.       Patient Sex is <value> based on specific medical reports <referenced>

This is a categorical statement that would apply to a great many different situations where a sex value is chosen to reflect physical examination results, chemical analysis results, internal imaging exam, etc.  It allows the private information contained in the reports to remain private.  The conclusion is kept as “sex” and the provenance provides only references to the clinical reports that support that conclusion.  Privacy rules can still be applied prior to giving access to those reports.

This is a very likely provenance for transgendered, intersex, and other situations where a sex of “O” is given.  The likely report is a simple diagnostic report explaining the diagnostic conclusion. That report then references multiple serotypical, genetic, imaging, pathological, and laboratory results.  This allows a layered privacy where the conclusion report can say “based on the results of all these tests and reports” the patient sex is <value>.  In many cases the recipient clinician will want to know what tests were used, but will not need to see the details of those tests.

4.       What are other realistic use cases?

 

Provenance Use Cases for Gender

1.       Patient Gender is <value> because the patient chose that gender during patient registration..

This is probably the most common provenance. 

2.       Patient Gender is unknown/missing because the patient has not chosen a gender.

This is the most likely provenance for infants and children.

3.       Patient Gender is <value> because the parent or guardian chose that gender during patient registration.

This is a realistic description of provenance and it also an area of concern in some countries where such parental choices are problematic.

4.       Patient Gender is <value> because the patient asserted that as their current gender, either re-confirming the same prior value or changing the current value.

5.       Patient Gender is <value> because the patient asserted that as the current gender; and, other persons (parent, guardian, physician, etc.) confirm that assertion.

 

6.       What are other realistic use cases?