Patient Profile ( Aboriginal Extension )

Given that whatever we produce will be the equivalent of 'STU' and can thus evolve as we get more feedback and implementation experience, I don't know that delaying is appropriate/necessary. But certainly having the value set informed by the CIHI proposed list - and referencing the CIHI work as a source of expected change would be appropriate. (In the end, we need a set that works for the first nations communities, for practitioners and for tools so getting early engagement and feedback from all groups will matter.)

Hello Shamil, Fariba,

Following is CIHI's response:

First Nations, Inuit and Métis are constitutionally recognized sovereign nations with inherent rights to self-determination. Although the term “Indigenous peoples in Canada” often refers to First Nations, Inuit and Métis peoples, these categories may not reflect the preferred community or nation-specific labels. For health data to become a source of empowerment, Indigenous communities should be involved in the conceptualization, implementation, collection, analysis, reporting and dissemination of their data. This is in part, illustrated through principles of Indigenous data sovereignty (e.g., First Nations principles of Ownership, Control, Access and Possession [OCAP®]). Engagement with Indigenous communities and data governance agreements can establish how these principles will be met.

CIHI is in the process of engaging with Indigenous authorities at national and regional levels to develop pan-Canadian standards for “Indigenous identity” data collection and health reporting. To inform this engagement, CIHI proposed an interim standard www.cihi.ca/sites/default/files/document/race-standard-reporting-update-en.pdf based on extensive research and early engagement. This interim standard may be subject to change following our engagement in the next 4-6 months. Following an analysis of feedback from engagement sessions with Indigenous authorities, CIHI hopes to be able to release a pan-Canadian Indigenous identity standard in 2021.

At this time, CIHI has not had sufficient engagement to formalize/recommend a pan-Canadian standard. CIHI recommends FHIR Implementation Working Group do their own engagement with Indigenous organizations, emphasizing the need for such a standard and importance of respecting principles of Indigenous data sovereignty. Alternatively, we recommend postponing the inclusion of an “Indigenous identity” or “Aboriginal status” variable until CIHI has completed our engagement (likely Spring 2021).

CIHI is available to discuss our interim standard and approach to engagement if needed.

Hi Fariba and Finnie,

I'd suggest to start a set of separate meetings to align value sets across provinces. Here at BC we started this discussion a while ago however we also do not have an official confirmation from BC FNHA what value sets to use.

Hi Finnie,

Sure, we can differ the discussion until you have time to provide your and Indigenous Health Teams input on this topic.

Thank you,
Fariba

Hi Fariba,

Thanks for bringing this up. I have brought this to the attention of our Indigenous Health team. Unfortunately, I will not be able to provide any feedback at this Friday's meeting, as we will have our internal meeting next week. Can I request that we defer a decision on this until after we are able to provide feedback?

Thanks
Finnie

Hi,
We are recommending Pan-Canadian FIHR extension for `Aboriginal status` and `Aboriginal Identity Type` under `Patient` profile as:

`Aboriginal Status`, CodeableConcept and include values- yes/no/unknown/prefer not to answer

`Aboriginal Identity Type` , CodeableConcept and values leverage from Pan-Canadian (CHI Terminology Gateway) `EthnicityCode` value set which includes the subset of aboriginal groups for Canadian such as Metis/Inuit/FirstNation

Please add this to one of the next meeting’s agenda, so we can hear comments or concerns from the other members.

Thanks,
Fariba Behzadi