Support exchange of CALD (Cultural and Linguistic Diversity) minimum data set

[dtr-agency]

Prerequisites

• [X] I have searched open and closed issues to make sure it isn't already requested or reported
• [X] I have written a descriptive issue title

The issue / feature

Change description

Provision of support for minimum CALD (Cultural and Linguistic Diversity) data set in electronic health information exchange in Agency FHIR and CDA specifications:

• Country of birth
• Preferred language
• Need for interpreter
• Year of arrival in Australia
• Ethnicity

What it actually enables people to do

Enablers for delivery of culturally and linguistically appropriate services for health care consumers and improved understanding of cultural and linguistic diversity within the population.

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.

Workarounds

N/A

Additional context

Country of birth is already supported in Agency FHIR and CDA specifications:	Specification	Description of support
Legacy Agency CDA specifications	SCS Data component SUBJECT OF CARE > PARTICIPANT > PERSON > DEMOGRAPHIC DATA > Country of Birth with CDA schema element of ClinicalDocument/recordTarget/patientRole/patient/birthplace/place/addr/country
FHIR-driven CDA specifications	Logical element of Patient > birthPlace with associated CDA schema element of ClinicalDocument/recordTarget/patientRole/patient/birthplace/place/addr/country
Agency FHIR implementation guides	Patient.extension:birthPlace.valueAddress.country

Preferred language is already supported in Agency FHIR and recent FHIR-driven CDA specifications:	Specification	Description of support
Legacy Agency CDA specifications	Not explicitly modelled; may be included as a local extension using the FHIR-driven CDA specification mappings
FHIR-driven CDA specifications	Logical elements Patient > communication > language & Patient > communication > preferred with associated CDA schema element of ClinicalDocument/recordTarget/patientRole/patient/languageCommunication with //languageCommunication/preferenceInd/value="true" and //languageCommunication/languageCode/code
Agency FHIR implementation guides	Patient.communication.language and Patient.comunication.preferred as "true"

Need for interpreter not yet supported in Agency specifications but core extensions on Patient resource are available, see http://hl7.org/fhir/R4/patient-profiles.html.

Reference materials

ABS reference materials relating to CALD:

• 1289.0 - Standards for Statistics on Cultural and Language Diversity, 1999 which has been superseded by the following:
• 1200.0.55.004 - Country of Birth Standard, 2016
• 1200.0.55.005 - Language Standards, 2016
• 1200.0.55.009 - Ancestry Standard, 2014, Version 2.1
• 1200.0.55.010 - Australian Citizenship Standard, 2014, Version 1.2
• 1200.0.55.008 - Indigenous Status Standard , 2014, Version 1.5
• 1200.0.55.003 - Religious Affiliation Standard, 2016
• 1266.0 - Australian Standard Classification of Religious Groups, 2016
• 1200.0.55.007 - Year of Arrival Standard, 2014, Version 1.5

AIHW METeOR relating to CALD:

• Cultural and language diversity cluster
• Person—religious affiliation, Person—religious affiliation, code (ASCRG 2011) N[NNN], Religious group code (ASCRG 2011) N[NNN]
• Person—year of first arrival in Australia , Person—year of first arrival in Australia, date YYYY, Year of first arrival in Australia
• Person—interpreter service required, Interpreter service required indicator, Person—interpreter service required indicator, yes/no/not stated/inadequately described code N, Person—type of interpreter service required, spoken language/non-spoken communication code N
• Person—preferred language, Person—preferred language, code (ASCL 2016) N[NNN], Allied health service event—preferred language, Allied health service event—preferred language, code (ASCL 2016) N[NNN], Preferred language
• Person—Indigenous status, Indigenous status, Person—Indigenous status, code N, Person—Indigenous status, code N

[dtr-agency]

Need for interpreter, suggest the core extension patient-interpreterRequired be adopted explicitly in HL7 AU Base Patient.

Also suggest AU Base Patient include guidance on how to indicate that an intepreter is required for a particular language - probably something like if a language is included with the preferred flag along with this extension then this should be understood as the language for which an interpreter should be provided.

For CDA support (assuming the core extension is adopted) suggest we extend the Agency CDA schema to include an extension 'interpreterRequiredInd' in LanguageCommunication. This allows for a language to be flagged as both preferred and need an interpreter, or to just flag the need for an interpreter if sending an instance of patient/languageCommunication with only the indicator instantiated, i.e. patient/languageCommunication/ext:interpreterRequiredInd="true". This potential extension is internally tracked as https://jira.digitalhealth.gov.au/browse/CDAXS-84.

Year of arrival in Australia, suggest this be an HL7 AU extension on Patient in HL7 AU Base. The definition of this element in ABS and AIHW is fairly well understood as:

the year a person (born outside of Australia) first arrived in Australia, from another country, with the intention of living in Australia for one year or more.

In the ABS standard year is collected and stored as four-digit calendar years (e.g. a response of '1985' is coded as '1985' in the classification). In AIHW this is a date of YYYY. Suggest the data type is a date constrained to years (obviously not a quantity :))?

Is there a need or would this be useful as a core extension for "Year of arrival"?

For CDA support (assuming a core extension is suggested) we would map this as an administrative observation using a SNOMED CT AU code to type the observation to a demographic history detail observation of year of arrival (A new concept code has been requested to support this). Mapping would be something like:

entry[year_arrival]/observation/code/@code="<insert SNOMED CT AU code>"
entry[year_arrival]/observation/value/@value="<insert year of arrival>"

Ethnicity, suggest that work is required in national reporting and guidelines to enabling consistent definition, collection, and exchange of this information. This data element looks to be defined and handled differently across various data sets, e.g. 'Ancestry'. At this time no implementation solution is suggested until agreement is reached across community and jurisdictional groups.

[robeastwood-agency]

This is planned to be raised at the next HL7 Patient Administration Working Group (PAWG) meeting, scheduled for 26 Feb 2020.

[robeastwood-agency]

Discussed at the 26 Feb PAWG with agreement (see minutes) to proceed with 2 additions to the AU Base Patient profile:

1. add the core extension patient-interpreterRequired (with context of Patient and 0..1); see GitHub ticket #356
2. Creation of new extension in the HL7 AU Base IG to cater for the year of arrival to Australia. see GitHub ticket #356

Agreement that Ethnicity is not ready yet for implementing anything specific.

[robeastwood-agency]

Created internal Agency task ticket to progress the addition of interpreterRequired extension:

• HL7 AU Base Patient - add extension for interpreterRequired - JIRA: CIFMM-3315

[dtr-agency]

Created internal Agency task tickest to create Patient profiles that include support for CALD elements: Create R4 Patient profiles (My Health Record) & Create R4 Patient profiles (Patient with Mandatory Identifier)

[robeastwood-agency]

Re year of arrival - the CI team will workshop a proposed design for the extension to the HL7 AU Base patient profile, to bring to a forthcoming PAWG, for ratification.

[robeastwood-agency]

Re year of arrival - the CI team has work-shopped the design of an extension and is now a PR on HL7 AU (https://github.com/hl7au/au-fhir-base/pull/404) - for discussion at PAWG

[robeastwood-agency]

The AU Base Patient profile now includes the extension Date of Arrival.

The newly created Patient with Mandatory Identifier profile has this element as must support = true.

[dtr-agency]

My Health Record Patient profile has included the additional elements with must support via https://github.com/AuDigitalHealth/ci-fhir-r4/commit/8e0b5a424ea2dd3bc120d0210c12825ff7370eee#diff-55b558c7ef820e6e00e5993b9e55d93b

[dtr-agency]

CDA mappings from this work will be progressed in a different internal story.

@robeastwood-agency what is left to do?

HL7 AU Base pull requests and issues are closed - extensions are included in HL7 AU Base Patient profile with examples and some usage notes Agency pull requests and issues are closed - must support in Agency Patient profiles with at least one example and some implementation guidance

[robeastwood-agency]

The implementable aspects of the CALD data set have now been implemented in HL7 AU, with support in derived Agency profiles. The 2 remaining aspects of this work will be managed as separate tickets:

• Ethnicity - awaiting necessary agreements in the business before anything can be progressed
• CDA mappings - as described above by @dtr-agency

[dtr-agency]

Need for interpreter CDA extension is now published in the Australian Digital Health Agency CDA Schema Extension 3.0 - CDA Schema v20201203