Christian thanks for your persistence and patience in getting this settled. Following your lead, I’ll confess my biases. I specialized in cross-cultural psychology and health psychology as part of my doctoral training in clinical psychology. I believe that the cultural meaning of an Ethnicity concept is important to the study of health and can be measured reliably though not as reliably as we’d like. So we should try to support it somewhere in the CDM.
Here’s a start on documenting some relevant “assumptions and limitations and current utility of the the current structure and vocabulary” as Patrick requested.
The Ethnicity definition that makes the most sense to me is as a demographic attribute that is distinct from and complementary to Race. More specifically, I suggest we define Ethnicity as an indicator or ethnocultural identity that a person ascribes to themselves. Ethnocultural identity refers to the extent to which an individual endorses and manifests the cultural traditions and practices of a particular group. Culture, in this sense, is the collection of historically defined beliefs, practices, and attitudes shared by a community.
Yes, it is messy. The relationship to language, religion, civic institutions, food choice, reading habits, recreational activities, etc. is complex and not absolute. The same is true, however, of the definition of some medical conditions. The definition of depression is also messy, for example. It doesn’t depend on fixed absolute characteristics that are free from subjective interpretation. Feeling worthless or guilty is one of about 9 symptoms that can contribute to the diagnosis of depression but it isn’t required. So one person gets the same Condition concept assigned to them for different reasons than another. Do we all understand feeling worthless or guilty in the same way? No we don’t. So the same symptom means different things to different people. It’s messy. Does that mean depression doesn’t have a clean enough definition to be reliably measured and used in reproducible research? No it doesn’t. The fabulous LEGEND studies demonstrate this clearly. It just means the concept definition is messy. We can and should find a way to deal with messy concepts when they are widely collected and can lead to important insights about health.
And Ethnicity as culture is important. It’s important because it’s associated with attitudes toward treatment seeking and other health behaviors and in some places it is a useful proxy for social factors that affect access to care and differences in how ostensibly equivalent care is delivered. It may affect my trust of medical institutions or my belief in effectiveness of “modern medicine”, or how I relate to providers or how they relate to me. etc…
The information we need to define ethnicity as a social determinant of health isn’t subsumed by a Race concept, even one with a suitably granular value set. A person of the same race, e.g. White, might or might not identify with an ethnicity e.g. Hispanic, for reasons that correlate or determine their health-related attitudes, behaviors, and access issues. That’s why it’s distinct from and complementary to Race.
It isn’t important whether or not ethnicity so defined might really be a proxy for wealth, education, or other factors. First of all we don’t know whether and to what extent that’s true in many cases. That is a topic for researchers to sort out rather than one we should prejudge, in my opinion. Second, we happily use a zillion concepts that are proxies for underlying causes. My blood sugar isn’t an invalid concept because it a proxy for underlying glucometabolic processes.
I agree that our goal is standardization and that standardization implies a clear definition that can be consistently applied across different regions, times, individuals, etc… The definition of ethnicity as culture isn’t ever likely to be as clear and reliable as we want. Your French-Canadian example is a good one. The situation is Maine, is interesting. French speakers in Maine were systematically discriminated against for generations - not allowed to hold management-level jobs, shamed for speaking French, etc. There are many communities in Maine that still largely descendants of Francophone populations. They’re rural and not nearly as healthy as communities with non-Francophone descendants. If sites have the data to study related questions, do we want to prohibit them from trying because the concepts are messy? That seems hard to justify given the fact that the approaches in OHDSI have been successfully applied to other messy concepts like depression.
The OHDSI convention, as Clair brought up on the CDM WG call, is to treat self-reported health-relevant information as Observations and store it in the OBSERVATION rather than the PERSON table as a marker of the greater subjectivity or unreliability of the information. Since definitions of Ethnicity as culture are likely to vary across region and since they rely on largely inscrutable personal definitions, this seems like a reasonable solution to me. Though there are good behavioral scales for measuring ethnocultural identity, they aren’t widely used. The degree of inconsistency seems generally greater than for depression, in other words, and for the reasons described in the paper Patrick cites, warrants a different level of trust.
In addition to where we store ethnicity information, we might want to define conventions for how we represent ethnicity-as-culture. Hispanic/non-Hispanic is not granular enough to be very useful. There is an OBO-compliant Ethnicity Ontology (EO). After a quick scan, it seems pretty comprehensive. Maybe it’s worth a more detailed look to see if it meets the Asiyah’s criteria for a well-defined ontology.
I apologize for the length of my reply, but you started it!