'Cultural and ethnic identity' archetype is ready for publication

Clinical CKM publication
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Hi everyone,

The ‘Cultural and ethnic identity’ archetype has gone through 1 review round and, pleasingly, surprisingly, has reached a consensus view and is now deemed good for publication. The Editors deliberately kept the archetype small, simple and as generic as we could. This is an important concept in terms of recording aspects of self-identity that contribute so much to social and emotional well-being and this is notoriously badly recorded, if at all, in current EHRs. There is no doubt that this archetype will need to evolve over time, once the humans have clarified the concepts better.

The anticipated context of use has been described as:

"Use to record the affiliation, kinship or connection of an individual with one or more groupings of people, usually self-identified.

Ethnicity is a concept that is frequently used inconsistently, such that existing or legacy data may be quite varied in content, including but not limited to:

  • A long-shared history (written or oral);
  • A cultural tradition, including family, social and religious customs;
  • A common geographic origin;
  • A common language; or
  • A minority or distinct group within the local community context.

In designing this archetype, the structure has deliberately been kept simple, to support any and all requirements for representing ethnicity. As the understanding around ethnicity and appropriate value sets are identified and agreed upon, this archetype may grow to support evolving clarity of requirements. The data element ‘Ethnicity’ allows multiple occurrences so that more than one ethnic and cultural identity to be recorded for the individual from a single value set, and also so that more than one representation of ‘Ethnicity’ can be recorded, for example explicitly recording First People status.

The ‘Ancestry’ data element has also been included to support health risk assessment related to family history and inherited disease, such as a genetic variations that increase the risk of Crohn’s disease in Ashkenazi Jews.

The amount of overlap between ‘Ethnicity’ and 'Ancestry may vary enormously between individuals, but separating each into distinct data elements will allow appropriate usage within the clinical context for decision support and provision of healthcare.

This archetype has been designed to be recorded as a single instance within a health record, persisted, updated and revised over time as a new version.

Ethnicity is often considered as a component of a demographic record for an individual however it has been represented within this clinical archetype for situations when it needs to be represented in a clinical data collection or is required to support culturally sensitive and appropriate healthcare delivery, for example in First Nations communities.

The concept of categorisation by race or skin colour is controversial. In some places, the term ‘race’ may be considered acceptable and interchangeable with ‘ethnicity’, yet is illegal in others. Contributing to the confusion, many value sets for ethnicity also contain values that describe physical characteristics such as skin colour or geographical origin. The concept of ‘Race’ may sometimes be used as a clumsy proxy for identifying risk factors related to social determinants of health (SDOH), however it is strongly recommended that archetypes that represent SDOH concepts be used for more accurate data capture."

Feedback from all reviews, including the latest review, can be found here: Clinical Knowledge Manager .
The Editors did anticipate more pushback and confusion but reviewer feedback surprised us with more positive statements than usual, such as:

"Amazing that you’re trying to capture something that is often so difficult to define but which can have such a huge impact on an individual’s well being, their relation to disease and to its treatment: well done!

“The self declared component is great as it gets over much of the problems in this type of data…”

“It’s a good design. Considering the topic is broad, the archetype should reflect it. Also, since there are local characteristics, there is a need to bring contributors with a knowledge of local particularities to categorize groups.”

Unless there are objections the ‘Cultural and ethnic identity’ archetype will be published on May 2, 2022.

Link to the archetype: https://ckm.openehr.org/ckm/archetypes/1013.1.5162

Please reply to this topic if you have any objections or comments.

Regards

Heather Leslie

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I’m a bit surprised that the Purpose and Use don’t indicate the clinical need or relevance of this data - i.e. how might it be used in healthcare. It’s implied with the statement about Crohn’s disease in Ashkenazi Jews, but not clearly stated. Presumably cultural preferences such as the refusal for blood transfusion based on religion comes under this archetype as well?

Since from the point of view of some patients, ethnicity might be a complicated thing requiring a lengthy description, but may or may not have any clinical relevance, should the archetype not state that it is mainly intended to record clinically relevant ethnicity? Which would then be more for the physician to determine based on questioning - many patients don’t know.

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We try not to become the medical textbook in the archetypes, i.e in the different score archetypes we assume the implementer and end users will know what the information in the archetype means and how it should be interpreted. The use cases of Cultural and Ethnic identity can be a variety, we’ve restricted to mention a couple of them - genetic/family prevalence of disease and to cater for cultural sensitive care.

There wil never be 1:1 relationship between cultural identity and decisions on future treatment, but this archetype can guide users to investigate, or drive decision support. Refusal of blood transfusion will be documented in the Advance intervention decisions archetype: Evaluation Archetype: Advance intervention decisions [openEHR Clinical Knowledge Manager]

It’s stated both in Purpose and Use the information is “usually self-identified”. Not necessarily “self-reported” :slight_smile: Ethnicity is indeed complicated and it is adviced to verify the information by a clinician during a consultation.

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