Baseline Canadian FHIR Profiles - Entities Stream Calls

Hi Lloyd, Ethnic origin data collection is part of the Ontario Anti-Racism Data Standard (ARD). ARD also recommends using the Stat Can 2016 Census Ethnic origin as permissible values.

Link to the Ontario ARD data standard which includes rationale and guidance for Ethnic origin data collection:
www.ontario.ca/document/data-standards-identification-and-monitoring-systemic-racism/collection-personal-information

Hi Lloyd,

Thanks for your comments. There are valid reasons for why we would want to collect ethnicities (e.g. to measure health inequalities). And as you know, to be able to do this analysis effectively, we need to have standardized data. Since there is a current recommendation to use the ethnicity value set published in Terminology Gateway, I am raising a few considerations in hope that it will help further in standardization of this data.

Finnie

We *could* use all sorts of things. However, we need to keep in mind that the objective of the baseline profiles isn't to change what data existing systems are capturing, it's to have them expose the data they currently have in a consistent way that can be leveraged by FHIR-based technologies (RESTful query, SMART, CDS Hooks, etc.). In the U.S., their choice of valueset wasn't based on clinical utility (it's pretty poor for that, based on my understanding). It was based on regulatory requirement. That regulatory requirement meant that existing systems were either already using the value set or had very little excuse to complain about a standard that required them to conform to the value set.

In our case, I'm not aware of any regulatory requirement to capture ethnic background as a "demographic" property. So we probably can't count on much support for it (or consistency in the support for it) by existing systems. We shouldn't be using the baseline profiles to try to drive such support or consistency. And frankly, I'm not clear on why we'd be trying to capture it for demographic rather than clinical purposes anyhow. The piece of information that's clearly needed for demographic purposes (because it relates to who pays and sometimes reporting requirements) is at least a course-grained categorization of aboriginal status. Is there anything else where either nationally or regionally we're expected to report by assertions of racial/ethnic origin? If so, pointers to the relevant regulations would certainly inform this discussion.

Hi,

Has the Statistics Canada list of ethnic origins reported in 2016 been looked at as a possible guide to narrow the list of supported ethnicities in the value set in Terminology Gateway? Here is the link: www12.statcan.gc.ca/census-recensement/2016/dp-pd/prof/details/page.cfm?Lang=E&Geo1=PR&Code1=01&Geo2=PR&Code2=01&Data=Count&SearchText=Canada&SearchType=Begins&SearchPR=01&B1=Ethnic+origin

Additionally, has the full list of Statistics Canada ethnic origins been looked at to see what a full list for ethnicities might look like? www23.statcan.gc.ca/imdb/p3VD.pl?Function=getVD&TVD=402936&CVD=402938&CPV=3.4&CST=18092017&CLV=2&MLV=3

Lastly, has the Statistics Canada list of ethnic origins been considered as a possible coding system? (To note: I have sent an inquiry to Statistics Canada re: RFC process for their list, how stable their codes are, and maintenance/publication frequency and I'm awaiting for their response).

Thoughts?

Thanks
Finnie

We agreed on the same, so it's not about forcing or imposing a constraint, just providing a textual recommendation how to format Canadian postal code.

lmckenzie wrote: Systems will still need to convey partial postal codes, erroneous postal codes and postal codes for non-Canadian addresses. So we can't impose this as a general constraint.

Hi Lloyd,

This was the main point of discussion and I agree we should not overload the core resource, but it might worth providing recommendations or guidance through a reference to a Canada Post site for how postal codes should be formatted. Is that possible?