FHIR Chat · Allowing gender in the fallback profile

Stream: smart/health-cards

Topic: Allowing gender in the fallback profile

Max Masnick (Dec 06 2021 at 15:34):

I’ve done a draft implementation based on our discussion last week at the PHWG con call about allowing gender in the fallback patient profile: http://build.fhir.org/ig/HL7/fhir-shc-vaccination-ig/branches/gender/StructureDefinition-shc-patient-general-ad.html

This includes a few changes:

Making gender 0..1 in the fallback general profile
The fallback US patient profile inherits from the general one, so I had to explicitly set gender to 0..0 in there
Adding some strong warnings about not including gender unless required by law to the definition and comment on gender
Separating our existing discussion in the general narrative about privacy into a separate “privacy by design” section to make our intent clearer

Max Masnick (Dec 06 2021 at 15:35):

You can see what changed in this commit: https://github.com/HL7/fhir-shc-vaccination-ig/commit/333eeb2d1ee7b433011bc6ea34a8dcc4a2899312

I’ll make a pull request for this later today (pending some tangential git cleanup)

Max Masnick (Dec 06 2021 at 15:38):

Note that we are running into a weird IG publisher bug that is causing these sorts of errors: The link 'StructureDefinition-shc-covid19-laboratory-result-observation-ad.html/profiles.html#data-minimization-and-privacy' for "data minimization reasons" cannot be resolved — for some reason it is adding an additional file name to the rendering of Markdown links like [data minimization reasons](profiles.html#data-minimization-and-privacy) in the definition. So those links are broken in the built IG until the publisher is fixed (or someone can tell me what I’m doing wrong if it’s not a publisher bug)

I reported it as part of https://github.com/HL7/fhir-ig-publisher/issues/245 as it seems to be related.

Max Masnick (Dec 06 2021 at 16:06):

One possible issue that I thought of when working on this: it’s possible someone may be presenting as a gender different than their administrative gender in their SHC. This is one of the reasons I made the changes to emphasize “privacy by design” — it’s an example of how including information that’s not strictly necessary can harm privacy.

Max Masnick (Dec 06 2021 at 16:06):

Along these lines, we should try to ensure that wallet apps display gender if it’s included in the SHC.

Grahame Grieve (Dec 07 2021 at 02:34):

it’s possible someone may be presenting as a gender different than their administrative gender in their SHC

Indeed, but if working in a jurisdiction that requires gender, it won't just be in SHC, it'll be everywhere, and a regular occurance

Grahame Grieve (Dec 07 2021 at 02:36):

Note that we are running into a weird IG publisher bug that is causing these sorts of errors

I can't reproduce this - I just get a number of these:

The link 'profiles.html#data-minimization' for "More information on the two types of profiles"

because you changed the anchor (presumably)

Max Masnick (Dec 07 2021 at 17:59):

Grahame Grieve said:

it’s possible someone may be presenting as a gender different than their administrative gender in their SHC

Indeed, but if working in a jurisdiction that requires gender, it won't just be in SHC, it'll be everywhere, and a regular occurance

Yeah, it's going to be a much bigger problem in jurisdictions that require gender. This is more of an argument for the "SHALL NOT include gender UNLESS legally required" conformance guidelines.