This will be the first of several posts exploring issues raised by the FHIR ballot.
The FHIR Ballot, btw, so far as 922 line items – by far the biggest ballot I’ve ever worked on. It certainly shows that people care. And there’s no reason to think that these won’t be resolved and a DSTU posted, though timelines are currently unknown.
A number of balloters have made comments something like this:
Subject is defined as “Resource (Patient)”, but the Patient resource does not contain race and ethnicity. Both race and ethnicity should be added to the Family History resource.
It’s correct that patient does not contain race and ethnicity. This was discussed at length by the Patient Administration work group that owns the patient resource, and in the end, they declined to add either attribute. There are 3 drivers of the race/ethnicity problem:
- HL7 has never offered a coherent definition of the concepts
- How they are understood and used varies widely around the world
- The only value sets offered for each of them are very US-centric
|RIM||A code classifying the person into a named category of humans sharing common history, traits, geographical origin or nationality||A code classifying the person into a named category of humans sharing a common real or presumed heritage|
|V2||This field refers tothe patient’s race||This field further defines the patient’s ancestry|
I ask, what are real or assumed heritage, but common history, traits, geographical origin, or nationality? And what is ancestry but race?
I have no idea what the difference between the two is. Wikipedia offers some discussion, but it doesn’t help me understand what HL7 is trying to do here. I think this must be cultural, because my US friends look at me blankly, and tell me that the difference is obvious. But I think most non-US people don’t see it as obvious.
V2 offers the following valuesets:
- 1002-5 American Indian or Alaska Native
- 2028-9 Asian
- 2054-5 Black or African American
- 2076-8 Native Hawaiian or Other Pacific Islander
- 2106-3 White
- 2131-1 Other Race
- H Hispanic or Latino
- N Not Hispanic or Latino
- U Unknown
You can see that this doesn’t conform in any meaningful way to the definitions above, and the value sets are highly US specific.
In v3, we get this definition on the ethnicity code system (apologies for the annoying wrapping on the target link, I’ll have to fix it):
In the United States, federal standards for classifying data on ethnicity determine the categories used by federal agencies and exert a strong influence on categorization by state and local agencies and private sector organizations. The federal standards do not conceptually define ethnicity, and they recognize the absence of an anthropological or scientific basis for ethnicity classification. Instead, the federal standards acknowledge that ethnicity is a social-political construct in which an individual’s own identification with a particular ethnicity is preferred to observer identification. The standards specify two minimum ethnicity categories: Hispanic or Latino, and Not Hispanic or Latino. The standards define a Hispanic or Latino as a person of “Mexican, Puerto Rican, Cuban, South or Central America, or other Spanish culture or origin, regardless of race.” The standards stipulate that ethnicity data need not be limited to the two minimum categories, but any expansion must be collapsible to those categories. In addition, the standards stipulate that an individual can be Hispanic or Latino or can be Not Hispanic or Latino, but cannot be both.
And for Race, we get this definition from the race code system:
In the United States, federal standards for classifying data on race determine the categories used by federal agencies and exert a strong influence on categorization by state and local agencies and private sector organizations. The federal standards do not conceptually define race, and they recognize the absence of an anthropological or scientific basis for racial classification. Instead, the federal standards acknowledge that race is a social-political construct in which an individual’s own identification with one more race categories is preferred to observer identification. The standards use a variety of features to define five minimum race categories. Among these features are descent from “the original peoples” of a specified region or nation. The minimum race categories are American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or Other Pacific Islander, and White. The federal standards stipulate that race data need not be limited to the five minimum categories, but any expansion must be collapsible to those categories.
Note that everything about these definitions is US-centric, though the race code system appears a little more applicable outside USA.
So following the FHIR rules for design and extensibility, race and ethnicity should be defined as extensions – and so we should define standard ones for USA, since all this is is driven by US statistical reporting considerations.
But note that the original comment is made against FamilyHistory, were there are more considerations at play than just simple statistical reporting. I’d particularly like comments (here or privately by email) on the question of what racial information is collected for family history considerations around the world. Though note that there’s an open issue about family history right now – this is a clinical family history, not a genetic family history, and we have not yet resolved the question of whether these two things are simply unrelated resources, the same resource, or something in-between.