OHDSI Home | Forums | Wiki | Github

Promoting aboriginal and/or torres straits islander

Is it possible to promote SNOMED aboriginal concepts to “standard” with new mappings in the race vocabulary? I appreciate that there are a lot of good reasons not to change the race vocabulary until we have a really good vocabulary but this is taking years and we need it for almost all Australian data sets. This is a very important classification because reporting criteria, funding and even which clinical practice guidelines should be used changes depending on this flag.
SNOMED has aboriginal, torres straits islander and aboriginal and torres straits islander as seperate concepts but in terms of clinical care these are all the same so it’s enough to have one aboriginal and/or torres straits islander for now.

Hello @guyt, thank you for bringing this up. At the moment, custom mapping can be done, and then subsequently map the SNOMED, though this may take several months. We can check the SNOMED during SNOMED refresh.

If this can be of help, we have one concept for Islanders that you may use: Athena

Similar issues have also been discussed in the forum, and this link may help shed some light into your concern as well: Race and Ethnicity in the OMOP CDM

True, @guyt. But we are almost there. We will add your races. No mapping anyway. You cannot map races, because they are not objectively defined.

Thank you both. I delibirately didn’t want to refer to previous discussions as much work there (that I will add some thoughts/requirements to momentarily). I was interested to see if there’s a way that certain races/ethnicities with specific use cases can be expedited as a temporary shortcut or alternative to the efforts to resolve this right.

We can certainly wait several months for this so I guess we will just do that for now.

Hi @guyt,

Just checking you are aware that the version of SNOMED in Athena is the international version, not the Australian edition, which means that the terms you are seeking are not actually available? The only concept_id available in the international version is 4186705, which I would suggest is inappropriate for use in this context.

At the APAC symposium recently, this issue was raised and a working group has been formed. An Indigenous reference group has been convened through an ongoing project in cervical cancer screening and HPV vaccination, and we would like to respectfully request that this effort of promoting the wrong SNOMED codes to the race domain is stopped until such time that a formal recommendation can be made that includes their input.

Totally understand the urgency for ensuring that there is a proper way to handle the identification of Indigenous populations (in Aus datasets specifically, but probably more generally too), and agree that it must be handled appropriately and with priority, but I think a more fulsome proposal is required than the mapping of a single inappropriate term. FHIR seems to have made a reasonable solution that leverages the terms from the Australian Digital Health Agency - expect we can learn from their experience.

@nicolepratt is aware of this working group as Australian chapter lead, and we are keen to work with both the health equity (@Jake) and vocabulary (sorry can’t find the right user to tag here) workgroups to affect a solution rapidly.

Thanks,
Georgie

t