Dealing with multiple races and other exceptions

[Christian_Reich]

@MPhilofsky

I would create a convention to direct ETLers to put all races & ethnicities in the Observation table with observation.observation_concept_id = 3050381, “Race or ethnicity” (honestly doesn’t matter what the concept_id is as long as it means race/ethnicity) and all the individual races and ethnicities would be ETL’d into the observation.value_as_concept_id field.

Why post-coordinate? Why wouldn’t a race as an observation be self-explanatory and go into observation_concept_id?

@MPhilofsky

Then I would gather every race/ethnicity/cultural/skin identifier from every source I could find in the world, divide them into singular concepts if needed, de-duplicate them on exact/almost exact text string match and make them all standard concepts with domain_id = ‘Race/Ethnicity’.

This appears hardly possible. Because races have no definition, and neither have ethnicities. They are geographical/social/biological trait-based/ideological categories that people either place other people in, or put themselves in, or a little bit of both. There is no test that would determine whether a Black person in the US or in Nigeria or in the UK is the same race. Or even Black. There is no way to decide whether my Grandmother’s ethnicity was Austrian, Czechoslovakian, Czech, East German or German (she held all passports at some point). We cannot deduplicate, except those concepts that are clearly derived from the same source (e.g. the US OMB race categories, which, btw, have changed over the years). We cannot even distinguish races from ethnicities (think “Indian” in Singapore, which is thought of a race there). That means we cannot create standard concepts (which require to be deduped), unless we allow everybody’s concept as an independent declaration of some category. Which is totally fine with me.

@MPhilofsky

@Christian_Reich is taking notes on use cases and what is in your source data.

Please bring them on. I haven’t heard much except some kind of regression between racial or ethnic categories and co-morbidities. @rimma was working on a project studying healthcare access.

@Andrew

Jake’s proposed changes to race and ethnicity quite a while ago

That’s the one I am strongly supporting.

@Andrew

many medical diagnoses don’t mean the exact same thing across cultures

That is not correct. It is true that especially in mental disease, but also in cancer, there are different schools of categorization, and they often happen to be centered between country or continent lines. But not because somehow different ethnicities go crazy in different ways, or have different malignancies. We are all the same creatures biologically, with very very rare exceptions (a handful of mostly monogenetic diseases). It’s just the way science develops. In fact, the very vast majority of conditions are in full consensus internationally, and passing a final exam in Med School in one country enables you to do the same thing in another country hands down (but do it fast before you start forgetting this massive corpus of encyclopedic information). I know that.