RichardTON
commented
3 years ago Ethnic Identity and Ancestry: types of relationship to ethnic groups
There are different ways in which a person may be associated with an ethnic group. A person may describe themself as descended from an ethnic group without considering themself to be a member of that group.
The ABS in Ancestry Standard, accessed 10 June 2021, uses 'ancestry' for this case.
'Ancestry describes the ethnic origin or cultural heritage to which a person identifies and/or to which a person's forebears are/were attached. Ancestry is an attribute of the counting unit 'person'. ' The Ancestry Standard uses the term 'ethnic identity' for a person's identification as a member of an ethnic group. That paper discusses ancestry and its distinctness from ethnic identity.
For the purposes of the ASCCEG, 'ethnicity' refers to the shared identity or similarity of a group of people on the basis of one or more distinguishing characteristics.
These characteristics include:
- A long shared history, the memory of which is kept alive.
- A cultural tradition, including family and social customs, sometimes religiously based.
- A common geographic origin.
- A common language (but not necessarily limited to that group).
- A common literature (written or oral).
- A common religion.
- Being a minority (often with a sense of being oppressed).
- Being racially conspicuous.
The key factor for the inclusion of an ethnic group [in the ASCCEG] is the group regarding itself and being regarded by others, as a distinct community by virtue of certain characteristics, not all of which have to be present in the case of each ethnic group.
Self-assigned ethnicity is consistent with patient-centric healthcare and with support of those who identify as outside of the mainstream. To the extent that ethnicity is relevant to engagement between a patient and a clinician, self-assigned ethnicity is the obvious choice. This implies that the most useful concept here will be 'ethnic identity'.
Prerequisites
The issue / feature
Change description
Extend provision of support for minimum CALD (Cultural and Linguistic Diversity) data set https://github.com/AuDigitalHealth/ci-fhir-r4/issues/13 in electronic health information exchange in Agency FHIR and CDA specifications to address:
What it actually enables people to do
Enabler for delivery of culturally and linguistically appropriate services for health care consumers and improved understanding of cultural and linguistic diversity within the population.
Terms and definitions
The terms and definitions from the ABS material is adopted for use in the Agency digital health exchange specifications.
Ethnicity Ethnicity refers to the shared identity or similarity of a group of people on the basis of one or more distinguishing characteristics. ABS Australian Standard Classification of Cultural and Ethnic Groups (ASCCEG) 2019.
NOTE: Ethnicity naturally includes ATSI groups. The definition of ethnicity should be explicit that it includes ATSI groups. Underdefined concepts reduce interoperability by encouraging variant understandings of the concept.
Ethnic Identity Identification with an ethnicity The information structure will support exchange of "one or more ethnicities with which a person identifies".
NOTE: Ethnicity is applicable to individuals, groups of individuals, and as a characteristic of some other type of concept such as a service or a device or a role.
Ancestry Ancestry describes the ethnic origin or cultural heritage to which a person identifies and/or to which a person's forebears are/were attached. Ancestry Standard
NOTE: Ancestry is included only for context, this work is scoped to ensuring support the exchange of ethnicity, and in particular, ethnic identity, in digital health.
How awesome would it be?
Awareness of a consumer's cultural and linguistic requirements enables providers to provide access to culturally appropriate resources, in consumers’ first language, on health issues and to improve inclusion of consumer needs in care planning.
Improved understanding of cultural and linguistic diversity within the population supports planning and delivery of services for a diverse potential target population.
Having the ability to code ethnicity from a national value set supports matching patients with healthcare sensitive to their culture. This supports patient-centred care.
Having a standard structure to richly express a person's ethnicity supports culturally appropriate interactions in supporting a patient's expressing an important aspect of their person and supporting practitioner awareness of ethnic complexity.
Workarounds
N/A
Additional Context
The current ethnicity extension in AU Base is a starting point but needs maturation in its conceptual definition, physical definition, terminology, scope of use, boundaries, guidance.
US Core Ethnicity Extension) specifically supports US regulations with two levels of granularity specifically - it's not applicable in an AU context.
The Primary Care Data Quality Foundations Clinical Content Working Group identified ethnicity as being of value, but complex and needing more work. They identified various branches of ethnicity: administrative ethnicity, ethnic identity, ethnic group, country of birth, language, religion.
There is no suitable terminology for ethnicity in the Australian healthcare context. Things that might be mistaken for suitable terminologies include:
Reference materials