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Dealing with multiple races and other exceptions

Vocabulary Users
#35

Hi all,

May I request that the specific vocabulary working group session that you will tackle this issue is scheduled at a time that representatives from the Australian chapter are able to be present and participate in the discussion.

Per conversations with Melanie and others at the symposium, it is the consensus within the Australian chapter that:

  • There is a well-established practice of capturing Indigenous status in Australia
  • There would be almost universal uptake within Australia of a specific observation type covering this established best practice, and there is no expectation that this observation would have relevance in any other setting and thus does not affect or overload any of the discussions here
  • Due to practices around data linkage that are (again) well-adhered to within an Australian setting, this CANNOT go in the person table (see slides posted in the health-equity channel in teams for references and full description if interested)
  • We have engaged with Indigenous data leaders in Australia to submit a fulsome community contribution that will be distinct from the race/ethnicity domain entirely, and include full documentation of conventions around the submission - this should not affect any changes made to race and ethnicity as discussed in this thread, as they will be standalone and distinct
  • This will include references to the Australian national standard on ethical conduct in research, and therefore is likely to stop anyone not using appropriate vocab items from receiving HREC (~IRB) approval + AH&MRC approval (additional oversight required for research questions pertaining specifically to Indigenous populations), so adding these concepts to race and ethnicity domain is actually counterproductive
  • The SNOMED codes for Australian Indigenous status are out of date and do not represent best practice in this setting, please do not elevate them to standard concepts
  • There is a concept ‘Neither Aboriginal nor Torres Strait Islander’ included in this typical practice which will be included - it is not considered a negative concept, rather a positive assertion of a negative fact (similar to a negative test result) and therefore must be supported

Details will be forthcoming, pending input from the Indigenous reference group.

As such, please do not conflate Australian Indigenous status with these updates - this will be submitted separately and handled at a chapter level.

Thanks,
Georgie

#36

Hi all
I am still new and try to map multiple race and failed.
I found some concepts like Mixed - White and Black African = 700389 or Mixed - Any other mixed background-700391 at Athena website under domain=race and class=race. But i cannot use them as the race_concept_id in person table because these concepts does not exist in my downloaded vocabulary table-concept. The foreign key stopped me. Shouldn’t I use them? Or my concept table (downloaded several weeks ago) needs some update?
Can anybody help me please?

#37

If you read the thread, you will see it is (and has been for a while) under discussion on what to do about multiple races.

#38

Thank you! @Mark
The discussion is all about how to make changes. My question is to use the current system. I can see these mix race items through Athena but my downloaded vocabulary table - concept did not include these concepts.

#39

Both the codes you quoted are non-standard, so they are not valid types to put into omop. Both of those map to white if you do a non-standard to standard mapping.

Also both are NHS codes, you may not have end user licensing for said set. I am American, so I have not idea as we do not use them.

In Athena, if you select the standard concept, you will see there are no current valid mixed race concept.

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#40

@Mark
NHS probably is the reason why my download vocabulary table-concept did not include them because i am in united states too. The other non-standard race concept like 8522-Other Race are all in the concept table.
Thank you.

Race Categories - missing mixed race
#41

Friends:

Right now, we don’t have a viable solution outside the US. So, no need to keep bringing this up. We have two proposals: Melanie’s and Jake’s (see above). We should discuss them and make a decision. Either one will solve the international and the mixed race situations.

@aostropolets will make this the agenda of one of the upcoming WG meetings. It will start at 9 am Eastern, so our Australian and Singaporean friends can participate.

#42

The assumption that it only seems to is based on an assertion that apparent cultural differences in syndromes are illusory. A different assumption is that mental health are influenced by and characterized by more than biology. I.e. that those differences are real rather than illusory and due in part to the real impact of culture.

The question, I think, is whether there are useful definitions that reflect the influence of culture in addition to biology. I think there are. If there are, a culture-bound entity could have a persistent identifier that uniquely resolves to a meaning that includes that cultural component. That definition isn’t for subset of people. It is for everyone. It just includes the cultural context as a component of the definition. But it is defined in a way that everyone understands and can use to refer unambiguously to a culture-bound entity.

#43

I do not disagree with you, but how does one do this? Let me give you an example of what our organization faces:

Our headquarters is in East Tennessee, which culturally is Appalachian and we have clinics that are in Memphis, which culturally is southern. The culture, that our headquarters is in, shares more with Nova Scotia than it does with our Memphis clinics yet if you ask the common person here, in the headquarters area(I do this often as I am a very curious person), they will tell you that they are southern.

In this case, self reporting would skew the data set yet how many providers have the training, time and patience to ask the correct questions to make this determination?

I think this ask goes beyond the auspices of OMOP.

#44

Let me repeat: The culture can have all the effect it wants. I am not debating that. The question is whether the definition of a condition is dependent on the culture. Like “Hispanic”, as derived from Spanish or Portugese culture and heritage, has a very different implication in Europe and the US. In conditions, there may be debates over what conditions there are, and how they should be defined, and the different schools fall on different sides of country borders, but once you declare one definition you are clean globally.

Maybe you have an example in mind that would illustrate your idea. But honestly, I sincerely hope not, because our global OHDSI network depends on the ability to refer to clinical facts in an unambiguous way. If diseases became as wishy washy as races and ethnicities we’d deprive ourselves of the very substrate that lets us generate evidence.

#45

Great! I need ~10 minutes to present my solution. Let’s get this on the agenda. This topic needs a conclusion.

2 Likes
#46

I have looked at the proposals briefly, but without a deep reading. Would someone do a simple TLDR; of the differences of the two proposals, please?

#47

HL7 FHIR uses the “CDCREC” (CDC Race & Ethnicity Codesystem) as the value set that would meet the requirement @MPhilofsky describes above. Today … (there’s another version on the way) that can be found here: Code System Details I highly suggest leveraging this content as this is what users of FHIR will have at-the-ready and it would be super tedious to have to chase down any codes in that set that are used in a FHIR implementation & not represented in the OMOP Vocabs. Please consider using this content.

1 Like
#48

No question, @DaveraG. But the problem we have is not getting one good value set. The problem is we have many, since they are projections to the societies they are made for, in this case. the USA. As I tried to explain before, seemingly same races and ethnicities have very different implications with respect to access to resources and participation in different countries, and are therefore not the same. We need a solution that will work in the US, UK, South Africa and Australia. And all other places.

Love it. Didn’t you know that pre-canned industrialized food is bad for you, and you should eat FIBERS? :slight_smile:

Ok. The ultrashort version: We:

  • Create a union of all race and ethnicity concepts anybody brings up, and slap a combined “Race/Ethnicity” domain_id on them.
  • Don’t deduplicate, unless they are from the same source.
  • Don’t allow flavors of null (unknown, don’t want to tell, etc.) or negatives.
  • Build no hierarchy.

Now the split. In the “Jake” proposal, we:

  • Allow mixed race and ethnicity concepts, again, based on demand (rather than a cartesian product).
  • Put the concepts into the PERSON table, one each into the existing race_concept_id and ethnicity_concept_id, according to the preference of the source data.
  • Collect no timing information. Races and ethnicities are static (even though recorded at different times).

In the “Melanie” proposal, we:

  • Don’t allow mixed race and ethnicity concepts (we might have to split some existing mixed concepts up).
  • Place concepts into the OBSERVATION table as value_as_concept_id, with the observation_concept_id = “Has race/ethnicity”, allowing multiple records (for mixed races or people changing their mind), each with a time stamp.
  • Remove the race_concept_id and ethnicity_concept_id fields from PERSON.

Did I get that right?

#49

What I am finding is that there are multiple entries for a patients race as the encounter (visit) lends itself to cataloging each time there is an encounter (visit occurance).
I had to create a “winning record” of each patients race to normalize across encounters.

My question pivots off to ask –
Why is the table OMOP PERSON not a dimension look up table?
The way I read it - is that for each person - if there is a different location and care site for a person then there are multiple entries. One for each person, location, care site combination.

Some unpacking of the above -
The location and care_site related column values are added to an entry for PERSON it means, at least from our data, that we can have many locations per person within one care_site because they can move from one department (location) to another with the hospital (care site)

Example: If a patient has been in three locations within the hospital (ER to Dept 1 then transferred to Dept2) then the OMOP person table will have 3 duplicate entries with the only difference being location where location is a department with the care site hosptial.

#50

Someone should tell the Maasai… :no_mouth: no evil fiber in their diet and look how healthy they are… hmmm :wink:.

This was close to what I thought, but I wanted to make sure I understood this before I commented.

I hate the idea of race/ethnicity in the observation table. One either has a race and ethnicity or one doesn’t; there is no middle ground. Either put it in the person table to drop race and ethnicity from OMOP altogether.

1 Like
#51

Sorry to interject but I would like to ask:

Can we separate race and ethnicity as they seem to be 2 very different concepts. I don’t know if this is an authoritative source but it seems that race seems to be something you are born with and is immutable, while ethnicity is described as “cultural identity, chosen or learned from your culture and family”. So the former seems to be something you’d attach to the Person as it is something that is immutable and comes from your biology (such as your birth date), while ethnicity is something that is learned and potentially changed over time…so wouldn’t the learned/change-over-time thing be more appropriate to put in observation while the thing that you are born as goes in person?

Alternatively, is it possible to just drop race entirely if we can perform our analytical use cases using ethnicity (or race over ethnicity?)

#52

Sounds like a good discussion for a Vocab WG (among other places). How should we go about it? I’m looking at, say, Dec 12, but our regular time (noon EST) may not work for everybody.

@gkennos what’s your time preference (I think others are US based but correct me if I’m wrong)? We can do an off-cycle call :slight_smile:

#53

This seems to be the same as Andrew Williams request above.

I would argue, as I believe that epigenetics and most the behaviorist would agree, that by time of adulthood, these characteristics are set. I am neither, so I say believe; I just read a lot.

Edit: Even in my terse reply, I am finding problems with it. What is adulthood? That varies from source to source and culture to culture. I do not say there is no validity to studying what culture has on health, but OMOP is not the correct vehicle for that.

#54

Re: selection of a content set… as you know both SNOMED and HL7 deal with this by declaration of “realms / realm-specific content” (HL7) or “editions” (SNOMED). As such, it is not inconceivable to parse context of use by geographic or political boundaries when curating standards and vocabularies.

I do not differ with your assertion:

“We need a solution that will work in the US, UK, South Africa and Australia. And all other places”

… but you are arguing with yourself in that you also state that to do so is impossible since these locales have different meanings & use cases. This later clarification is indicative of a need to declare the region / realm etc as HL7 and SNOMED do.

Also: I was asking to please leverage ther work in HL7 an INCLUDE the CDCREC. I am sorry if I was not being clear and that appeared that I was indicating that was the all-singing-all-dancing value set. That is a very easy go-to for the (in HL7 parlance:) US realm

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