IF WE DON’T COUNT IT… IT DOESN’T COUNT!

Towards Consistent National Data Collection and

Reporting on Cultural, Ethnic and Linguistic Diversity

Issues Paper | September 2020

Updated 27 October 2020
 FECCA IS THE PEAK, NATIONAL MULTICULTURAL BODY REPRESENTING
AUSTRALIANS FROM CULTURALLY AND LINGUISTICALLY DIVERSE
BACKGROUNDS. FECCA’S ROLE IS TO ADVOCATE AND PROMOTE ISSUES
ON BEHALF OF ITS CONSTITUENCY TO GOVERNMENT, BUSINESS, AND THE
BROADER COMMUNITY.
FECCA STRIVES TO ENSURE THAT THE NEEDS AND ASPIRATIONS OF
AUSTRALIANS FROM DIVERSE CULTURAL AND LINGUISTIC BACKGROUNDS
ARE GIVEN PROPER RECOGNITION IN PUBLIC POLICY.
WE WORK TO PROMOTE FAIRNESS AND RESPONSIVENESS TO OUR
CONSTITUENCY IN THE DELIVERY AND DESIGN OF GOVERNMENT POLICIES
AND PROGRAMS. WE PROMOTE MULTICULTURALISM AS A CORE VALUE
THAT DEFINES WHAT IT MEANS TO BE AUSTRALIAN IN THE 21ST CENTURY.

This version includes an additional endnote 13.

ACKNOWLEDGEMENTS
FECCA wishes to acknowledge the input of organisations and individuals who have contributed
significantly either to advice on CALD data or to the development of this paper.

Australian Bureau of Statistics (ABS)

Australian Clinical Trials Alliance (ACTA)—Nicola Straiton

Australian Institute of Health and Welfare (AIHW)

Australian National University—A/Professor Naomi Priest, Centre for Social Research and
Methods

Cancer Council Victoria—Christie Allan

Centre for Ethnicity, Culture and Health

Cultural Infusion—Nivy Balachandran, Peter Mousaferiadis and Martin Plowman

Diversity Council of Australia

McCabe Centre for Law & Cancer—Tarishi Desai

Mental Health Australia—Ruth Das

National Ageing Research Institute (NARI)—A/Professor Bianca Brijnath

National Ethnic Disability Alliance (NEDA)—Brian Cooper

RMIT University—Professor Sara Charlesworth

University of Sydney—Professor Claire Vajdic, Centre for Big Data Research in Health

University of Sydney—Dr Fiona Stanaway, School of Public Health

We welcome any comments on this paper –

[email protected]

Towards Consistent National Data Collection and Reporting on Cultural, Ethnic and Linguistic Diversity 3
CONTENTS

1. RECOMMENDATIONS 5

2. SUMMARY 6

3. KEY DEMOGRAPHICS – CENSUS 2016 7

4. THE NATIONAL STANDARDS 8

5. CURRENT PRACTICE 10
5.1 ADMINISTRATIVE DATA 10
5.2 SURVEY DATA 13
5.3 RESEARCH 14

6. INADEQUACIES IDENTIFIED BY AIHW 16

7. AUSTRALIAN GOVERNMENT MULTICULTURAL ACCESS

AND EQUITY POLICY 17

8. TOWARDS CONSISTENT NATIONAL DATA COLLECTION

AND REPORTING 18
8.1 CRITICAL DECISION POINTS 18
8.2 ESTABLISHMENT OF A NATIONAL WORKING GROUP 21

Note
The term ‘cultural and linguistic diversity’ with the associated acronym ‘CALD’ is currently
used within Australian government, the private sector, and in research and academic
institutions to describe populations other than the Anglo-Celtic majority.
Some commentators view the term as increasingly problematic (see 8.1.5 below) and note
that is does not include consideration of race/ethnicity which are regarded as impacting
significantly on health and other inequalities. It is also suggested that the term is not
readily understood or actively used by the communities which are defined by it.
In this paper, if the term ‘CALD’ was used in an original source document, it is retained.
Otherwise, the paper refers to ‘cultural, ethnic and linguistic diversity’.
1. RECOMMENDATIONS
1 The national collection of data on cultural, ethnic and linguistic diversity should be
nationally consistent, comparable and compatible, and apply the FAIR Data Principles
(see 8.1.3 below).
2 The 1999 Australian Bureau of Statistics Standards for Statistics on Cultural
and Language Diversity are now twenty years old and there is evidence that they
are not being used consistently. It would be timely and appropriate to conduct a
comprehensive review of their usefulness and applicability.
3 Administrative data sets (including primary health care and general practice) should
include appropriate measures of cultural, ethnic and linguistic diversity in order to
inform evidence-based policy development, resource allocation and service planning.
Only then can we ensure that services are accessible, inclusive, and responsive to the
needs of all people in Australia.
4 In order to be representative of the Australian population as a whole, general
population surveys should ensure that sampling methodologies and collected data are
inclusive of people from culturally, ethnically and linguistically diverse backgrounds.
5 (a) Funding bodies for social and health research (including clinical trials) should
require applicants to demonstrate how the proposed research will be inclusive
of people from culturally, ethnically and linguistically diverse backgrounds so as
to not compound health inequities.
(b) Health, including disease onset and outcomes, and health risk factors and
determinants are clearly patterned by ethnicity internationally, yet Australian
data are severely lacking in this area. Australian data should include, where
relevant, an indicator of ethnicity.
(c) In addition to the currently required Aboriginal and Torres Strait Islander
indicator, measures of cultural, ethnic and linguistic diversity should be included
in the National Notifiable Diseases Surveillance System (NNDSS).
6 The Australian Government should:
(a) refresh its Multicultural Access and Equity Policy and include mandated cultural,
ethnic and linguistic data collection requirements from Government departments
and agencies.
(b) establish a robust mechanism for oversight of implementation and reporting.
7 Various mechanisms are required to mandate the collection and reporting of data on
cultural, ethnic and linguistic diversity, dependent on the context, to ensure national
consistency, completeness and comparability, and the application of the FAIR Data
Principles.
8 Consideration should be given to the feasibility and usefulness of introducing a
self-identifier of culture and/or ethnicity similar to the Aboriginal and Torres Strait
Islander self-identifier.
9 Consideration should be given to the feasibility and usefulness of introducing a
variable relating to race/ethnicity, particularly in health and medical research.
10 The Australian Government should establish a high-level national working group,
involving relevant stakeholders and expertise to develop recommendations as to
how national and jurisdictional data collection and reporting on cultural, ethnic and
linguistic diversity can be more consistent, complete and useful.

Towards Consistent National Data Collection and Reporting on Cultural, Ethnic and Linguistic Diversity 5
 2. SUMMARY
The Federation of Ethnic Communities’ Current inadequacies in relation to these
Councils of Australia (FECCA) suggests that data impacts on research. In addition, many
current Australian data collection and reporting study designs for qualitative and quantitative
on cultural, ethnic and linguistic diversity, research into issues affecting all Australians
particularly in relation to human services (such as dementia prevention and care) actively
planning and delivery (including health, mental exclude diverse cultural or ethnic voices by
health, aged care, disability and social services), insisting on English language proficiency as
is inadequate. This is true of administrative an inclusion criterion. Lack of representation
(reporting on service delivery) and survey data, in research studies by diverse populations
as well as social and medical research. therefore impacts on the generalisability of
research findings and, at a societal level,
The most commonly collected variables or
we need to acknowledge that the potential
criteria for identifying people from culturally
benefits of health research, for example, may
and linguistically diverse (CALD) backgrounds
not be reaching the most vulnerable groups.
are:
The validity of many studies is therefore
• country of birth—excluding the so-called compromised by not accurately reflecting the
Main English-Speaking Countries (MESCs) diversity of the Australian population.
• language spoken at home/preferred
Data should be collected in line with agreed
language.
data standards and used by all Commonwealth
Consequently, significant numbers of people and State/Territory Government departments
who may have been born in Australia, who such as the Departments of Health, Social
may have English language proficiency, or who Services and Home Affairs and agencies such
continue to identify strongly with a particular as the National Disability Insurance Agency to
cultural or religious group are often excluded ensure access and equity is achieved. These
from CALD data sets. In addition, the exclusion disaggregated data collected by agencies must
of people from diverse cultural or ethnic be available externally for the purposes of
backgrounds who were born in the MESCs, analysis and research. Research funding bodies
including UK, Ireland, Canada, United States, should also develop mechanisms similar to
New Zealand and South Africa, the populations those required by the National Institutes of
of which are increasingly diverse, means that Health in the United States (see 8.1.4 below)
Australian data may underrepresent CALD to ensure the inclusion of culturally, ethnically
populations. The current measures exclude and linguistically diverse populations.
approximately 1.4 million persons who have
FECCA calls for the establishment and
English as their spoken language but were
resourcing of a National Working Group to
born in Australia and have one or both parents
develop consistent and accurate measures
born in a non-MESC.
of cultural, ethnic and linguistic diversity to
ensure adequate, appropriate, accessible and
useful data collection.

RECOMMENDATION 1
The national collection of data on cultural, ethnic and linguistic diversity should be
nationally consistent, comparable and compatible, and apply the FAIR Data Principles,
see 8.1.3 below.

6 IF WE DON’T COUNT IT… IT DOESN’T COUNT!

3. KEY DEMOGRAPHICS – CENSUS 2016

In 2016, nearly half (49%) of Australians

had either been born overseas (first
generation Australian) or one or both First
generation
parents had been born overseas (second
generation Australian). 28.4%
As of 2015, Australia had the 9th largest
number of overseas-born people, higher
than both Spain (10th) and Italy (11th).
While the United States of America
had the highest total number of people
born overseas (47 million or 14% of Second
their population), Australia had a higher generation
proportion of overseas-born people, at 20.9%
26%. Australia also had a higher proportion
of people born overseas than our neighbour Third-plus
New Zealand (23%) and Canada (22%), generation
other countries founded on migration. 50.7%
Fifty years ago, in 1966, Australia’s
overseas-born population was only 18% of
the total Australian population

In Australia, there were over 300 separately identified languages

spoken at home in 2016:
• more than one-fifth (21%) of Australians spoke a language
other than English at home.
• Of those:
− 82.3% reported speaking English well or very well
− 16.6% reported speaking English not well or not at all.

Of the 2,139,277 persons who arrived from

the beginning of 2007 to August 2016:
• 34% identified with a Christian religion
• 31% identified with another religion
• 30% reported no religious affiliation Source: ABS Census of Population and Housing, 2016

Census data provide rich insights into Australia’s cultural, ethnic and linguistic diversity. The data
are, however, only collected every five years.
The significant diversity established by the Census underscores the importance of the collection and
reporting of complete, consistent and comparable administrative, survey and research data which is
inclusive of all Australians.

Towards Consistent National Data Collection and Reporting on Cultural, Ethnic and Linguistic Diversity 7
 4. THE NATIONAL STANDARDS
The Australian Bureau of Statistics (ABS) The Standards include:
Standards for Statistics on Cultural and • recommended questions
Language Diversity1 (the Standards) were
• classifications and coding structures
published in 1999 in response to a widely
recognised need for a nationally consistent • output for categories.
framework for the collection and dissemination The Standards are reviewed prior to each
of data on cultural and language diversity. ABS Census of Population and Housing. At a
Endorsed by the then Council of Ministers of minimum, the order of response options in
Immigration and Multicultural Affairs in April the questions for Ancestry, Country of Birth,
1999, it was intended that the Standards be Languages Spoken, and Religious Affiliation
used by government, academic and private are updated using results from the previous
sector organisations in all relevant data Census. The Year of Arrival in Australia
collection activities to improve the compatibility standard includes the Country of Birth question
and comparability of data derived from and it is updated to reflect any changes to the
different sources. Country of Birth question. All ABS household
surveys are required to use these Standards
The Standards recognise that there are where these indicators are collected.
many elements to cultural and language
diversity which must be considered to provide The 2016 Census was the first time that the
an accurate measure of such diversity. It is country of birth of a person’s mother and father
proposed that to use a single standard variable, was collected.
such as country of birth, or a non-standard Implementation of the Standards by
composite such as [the former] Non-English- Commonwealth Government departments and
Speaking Background (NESB), is inadequate. agencies was supported by the release of The
The Standards establish a number of variables. Guide—Implementing the Standards for Statistics
on Cultural and Language Diversity2 (the Guide) in
June 2001. The Guide was developed by the then
The Minimum Core Set of Cultural and Commonwealth Interdepartmental Committee
Language Indicators includes four variables: on Multicultural Affairs and contains practical
• Country of Birth of Person advice on how to improve statistical practices
in relation to CALD, whilst not mandating any
• Main language other than English
indicators. The then Minister for Immigration and
spoken at home
Multicultural Affairs encouraged all departments
• Proficiency in spoken English and agencies to implement the Standards.
• Indigenous status
The Standards are directly relevant to all data
collection and reporting on cultural, ethnic and
linguistic diversity.
The emergence of a number of data integration
The Standard Set of Cultural and Language
projects, such as the Multi-Agency Data
Indicators includes additional variables:
Integration Project (MADIP), raises the potential
• Ancestry of rich insights into cultural and language
• Country of birth of father diversity derived from a range of data sources,
• Country of birth of mother provided that there is consistency in the data
collection. MADIP can be further mapped to
• First language spoken
other data sources such as the ABS National
• Languages spoken at home Health Survey to provide a greater depth of
• Main language spoken at home knowledge on the health of diverse populations.
• Religious affiliation By integrating aspects such as risk factors
and chronic conditions, this information could
• Year of arrival in Australia
be used more broadly to inform health service
planning and data-driven policy.

8 IF WE DON’T COUNT IT… IT DOESN’T COUNT!

In 1999 the Standards proposed that the • allowing data from different sources, and
adoption of a Standard Set of Cultural and different time periods, to be compared and
Language Indicators, with standard questions integrated in a meaningful way
and data collection procedures, would provide a
• improving the quality, relevance and
number of significant benefits, including:
accuracy of data produced
• providing a consistent method for
• reducing development and operational costs
measuring cultural and language diversity
for agencies collecting data on cultural and
in all statistical and administrative
language diversity by providing a ready-
collections
made and reliable method for use in all
service provision settings.

RECOMMENDATION 2
The 1999 Australian Bureau of Statistics Standards for Statistics on Cultural and
Language Diversity are now twenty years old and there is evidence that they are not
being used consistently. It would be timely and appropriate to conduct a comprehensive
review of their usefulness and applicability.

Towards Consistent National Data Collection and Reporting on Cultural, Ethnic and Linguistic Diversity 9
 5. CURRENT PRACTICE
5.1 ADMINISTRATIVE DATA

There is a body of evidence that administrative • Unlike Aboriginal and Torres Strait Islander
data on cultural, ethnic and linguistic diversity indicators, variables capturing cultural,
are not collected consistent with the Standards: ethnic and linguistic diversity are not
consistently collected in general practice
• Annual Reports on Government Services
software programs and are therefore not
(ROGS), in 20193 and 20204, define CALD
integrated with Medical Benefits Scheme
recipients of aged care services simply as
(MBS) and Pharmaceutical Benefits Scheme
‘those born overseas from countries other
(PBS) data. The Practice Incentive Program
than the United Kingdom, Ireland, New
(PIP) Eligible Data Set does not contain any
Zealand, Canada, South Africa and the
measures of cultural, ethnic and linguistic
United States of America’. This definition
diversity. This is a missed opportunity given
also appears in the current version of
that 90% of Australians will visit a GP at
the Australian Institute of Health and
least once every 12 months.
Welfare’s (AIHW) National Aged Care Data
Clearinghouse Data Dictionary.5 • The AIHW manages a number of national
health and welfare data sets the majority
• The National Disability Insurance Agency
of which use only ‘country of birth’ and/or a
(NDIA) uses a similar definition, with the
language indicator.
addition of a language indicator: ‘CALD is
defined as country of birth is not Australia,
New Zealand, the United Kingdom, the
United States of America, Canada or South
Africa; or primary language spoken at home
is not English’.6

10 IF WE DON’T COUNT IT… IT DOESN’T COUNT!

Table S5.3.4: CALD measure in AIHW health data collections

Country of Main Preferred Interpreter Period of

birth language language service residence
other than required in
English Australia
spoken at
home

Adolescent and youg adult x

cancer (clinical) NBPDS

Alcohol and other drug x x

treatment services NMDS

Australian National Infant x

Feeding Survery

Community mental health care x

database

Disability Services NMDS x x

National Bowel Cancer x

Screening Program NBEDS

National Hospital Morbidity x

Dtabase

National Mortality database x x

National Perinatal Data x

Collection

National Prisoner Helth Data x x

Collection

Non-admitted patient National x

Best Endeavours Data Set

Public dental waiting times x x

Residential mental health care x

Source: AIWH data collections

Supplementary tables for Australia’s Health 2018

Towards Consistent National Data Collection and Reporting on Cultural, Ethnic and Linguistic Diversity 11
 • There are some specific data on cultural, • In relation to health-related data, in 2018
ethnic and linguistic diversity within the the Western Australian Department of
AIHW publication Australia’s Health 2018 Health released its Review of Cultural and
(Chapter 5.3).7 Australia’s Health 2020 does Linguistic Diversity (CaLD) Data Collection
not, however maintain this focus. In the Practices in the WA Health System.10 The
new Australia’s Health 2020: Health Data paper provides analysis of the issues and
Insights, of some 60 data tables,8 none makes several recommendations for the
refer to diversity indicators, other than to jurisdiction in relation to both the variables
Aboriginal and Torres Strait Islanders. This collected, and the quality of data collection.
deficit is acknowledged on page 6: ‘some
• Rich analysis of various sources of data
notable gaps in Australian health data and
relating to migrants (who are more
analysis—relating to health status; patient
readily identifiable as a specific culturally,
pathways and health system use; and
ethnic and linguistically diverse cohort)
health system activity and performance—
is, however, available through the ABS
are: […] information on some population
Migrant Statistics Program which aims
groups, including people with disability;
to understand and support high priority
culturally and linguistically diverse
emerging needs for migrant statistics by
populations; refugees; and lesbian, gay,
providing relevant statistical solutions,
bisexual, transgender, queer and intersex
including analysis, to inform policy and
populations’.
research in relation to migrants and their
• There are no such readily accessible data in settlement outcomes.
the AIHW’s Australia’s Welfare 2019.9 This
• Administrative data linked to the Census
despite the observation that ‘demographic
through MADIP can provide additional
and cultural changes have affected how
information on the population identified in
governments and organisations delivering
the most recent Census and therefore allow
welfare services respond. Through shifts in
for follow-up of the health of the known
cultural norms and attitudes, age structure
population in the intervening years.
and migration, Australia’s population is one
that is ageing, growing and becoming more
socially and culturally diverse, and has
higher levels of education’ (page 7).

RECOMMENDATION 3
Administrative data sets (including primary health care and general practice) should
include appropriate measures of cultural, ethnic and linguistic diversity in order to
inform evidence-based policy development, resource allocation and service planning.
Only then can we ensure that services are accessible, inclusive and responsive to the
needs of all people in Australia.

12 IF WE DON’T COUNT IT… IT DOESN’T COUNT!

5.2 SURVEY DATA

The Census provides rich data on cultural, FECCA representatives attending the
ethnic and linguistic diversity, mainly because University of New South Wales 2019 Social
it applies the National Standards, and offers Policy Conference asked numerous presenters
support to people of diverse backgrounds in if their research had been inclusive of diverse
completing the census form. The Census is, populations. The most common response was
however, a snapshot of the population at a that it had not, usually because of increased
single point of time, collected every five years. expenses arising from interpreter use.
The ABS National Health Survey does collect Many population-based surveys do not include
indicators such as ‘language spoken at home’, a question or questions that could identify
‘language proficiency’, and ‘country of birth of respondents as being from a culturally,
parents’. ethnically and linguistic background, often
relying on indicators such as ‘country of birth’
In a range of other surveys, language barriers
or ‘preferred language’. These indicators
can lead to an under-representation of CALD
alone, as outlined at 4.1 above, are not
people where English is used or is required for
necessarily adequate or accurate.
self-reported information. Language barriers
can also prevent culturally and ethnically Even if interpreters are used or the survey
diverse people with limited English proficiency instrument is available in other languages,
in participating in other survey mechanisms, insufficient attention is paid to ensuring that
such as focus groups. participants understand key concepts relevant
to the survey.
Exceptions include surveys or focus groups
which target specific populations such as: For example, surveys into complex social
refugees, humanitarian entrants, new and issues such as: carers; sexual harassment;
emerging communities, and recent migrants. family violence; child protection; and dementia,
These specific populations are considerably often fail to address cultural understandings
easier to identify. of these issues or their relevance in the
Australian context.

RECOMMENDATION 4
In order to be representative of the Australian population as a whole, general population
surveys should ensure that sampling methodologies and collected data are inclusive of
people from culturally, ethnically and linguistically diverse backgrounds.

Towards Consistent National Data Collection and Reporting on Cultural, Ethnic and Linguistic Diversity 13
 5.3 RESEARCH

Current inadequacies in relation to data 1. In October 2019, a paper11 by academics

on cultural, ethnic and linguistic diversity from Sydney University and the National
impacts on research, as evidenced by frequent Ageing Research Institute (NARI) in the
underrepresentation or exclusion (conscious Medical Journal of Australia suggested
or inadvertent) of people from diverse that Australian dementia research is
backgrounds in social and clinical research. not sufficiently inclusive of Australians
Many qualitative and quantitative studies from CALD backgrounds and that, as
into issues affecting all Australians (such as a consequence, they may be receiving
dementia) actively exclude these voices by inequitable or inappropriate dementia
insisting on English language proficiency as an care.
inclusion criterion.
42 of the 94 registered active dementia
The validity of many studies is therefore clinical trials in Australia excluded patients
compromised by not accurately reflecting the not fluent in English. CALD Australians
diversity of the Australian population. The were also excluded from epidemiological
use of administrative datasets for research research on dementia. Of 16 studies
has huge potential to address this issue by identified, all collected data exclusively in
providing population representative research English, and six excluded participants who
samples. However, in order to be an effective were not fluent in English. A roadmap has
resource for examining cultural and ethnic since been developed to further research
differences in health and health care access, in this area.
these administrative datasets need to contain
adequate measures of cultural, ethnic and
2. In 2015 FECCA commissioned a Review
linguistic diversity.
of Australian Research on Older People
There is also an issue with research where from CALD Backgrounds.12 The review
ethnicity, as opposed to cultural or linguistic identified research gaps in the evidence
diversity, is an important element. Australian base on older CALD Australians, including
research tends to rely on country of birth as research about: particular CALD groups,
the sole measure of ethnic diversity, mainly including new and emerging communities;
because this is usually the only variable older people from refugee backgrounds;
available in datasets. Country of birth is an those who arrive in Australia at an older
inadequate measure of ethnicity in certain age; people from smaller population
individuals such as ethnic Chinese born groups; or those who live in regional, rural
Singapore, Indonesia or Malaysia, ethnic or remote areas.
Indians born in countries such as Fiji, the
Further gaps were identified in particular
United Kingdom or Uganda, displaced refugees
topic areas including: treatment and
born in other countries, and the growing
care options for older people from CALD
population in Australia who are Australian-born
backgrounds once a health diagnosis has
but whose parents are migrants from a variety
been made; communications between
of ethnic backgrounds. Country of birth also
CALD residents in aged care facilities
does not capture other socially determined
and care workers; and the increasing
factors that can have a significant impact
proportion of people from CALD
on inequalities in access to and the quality
backgrounds in the aged care workforce.
of provided health services such as English
language proficiency and discrimination based The same review identified a number of
on race/ethnicity. items in the literature which highlighted
the difficulty of including and retaining
The Australian Clinical Trials Alliance is
CALD participants in research, and the
currently embarking on work to increase the
need for appropriate strategies to address
awareness of and access to clinical trials by
this, including the provision of relevant
people from diverse backgrounds.
language services
Some examples of exclusion of these
population groups in clinical and research
settings include the following:

14 IF WE DON’T COUNT IT… IT DOESN’T COUNT!

3. In 2019, at the Clinical Oncology Society 4. In relation to the COVID-19 pandemic,
of Australia Annual Scientific Meeting, with the exception of an Aboriginal and
Cancer Council Victoria hosted a Torres Strait Islander indicator, no other
breakfast symposium to explore the measures of ethnicity are required to
underrepresentation of CALD people be reported at the national level in the
in cancer clinical trials due to various National Notifiable Diseases Surveillance
barriers including challenges with System (NNDSS).
communication, opportunity and
This would seem an omission of serious
awareness, and cultural issues.
concern, given these data would be
essential to inform targeted public health
An analysis of 20,000 cancer patients in
initiatives and messaging to culturally,
South West Sydney suggested limited
ethnically and linguistically diverse
access to clinical trials as being most
communities, for research purposes, and
significant for CALD people whose
to improve national capacity to respond
preferred language is not
comprehensively to future disease
English, with recruitment of these patients
outbreaks or pandemics.
as low as 3.9% compared to 8.4% for non-
CALD patients and 7.7% of CALD patients The AIHW publication Australia’s Health
who were proficient in English.13 2020: Data Insights14 addresses COVID-19
impacts (Chapter 2: Four months in:
what we know about the new coronavirus).
A consequence of the diversity data
deficit in the NNDSS is that the only
demographic variables reported on are
age, sex and Aboriginal and Torres Strait
Islander status.

RECOMMENDATION 5
(a) Funding bodies for social and health research (including clinical trials) should
require applicants to demonstrate how the proposed research will be inclusive of
CALD people so as to not compound health inequities.
(b) Health, including disease onset and outcomes, and health risk factors and
determinants are clearly patterned by ethnicity internationally, yet Australian data
are severely lacking in this area. Australian data should include, where relevant,
an indicator of ethnicity.
(c) In addition to the currently required Aboriginal and Torres Strait Islander
indicator, the reporting of a measure of ethnicity should be included in the National
Notifiable Diseases Surveillance System

Towards Consistent National Data Collection and Reporting on Cultural, Ethnic and Linguistic Diversity 15
 6. INADEQUACIES IDENTIFIED BY AIHW
The need for consistent, comparable and Although the two publications addressed below
compatible data on cultural, ethnic and related specifically to aged care, it can be
linguistic diversity has frequently been raised assumed that the issues identified would be
by the AIHW—for example, in Australia’s Health similar to those in other data sets.
2018 (Chapter 5.3 Culturally and linguistically
• Cultural and linguistic diversity measures in
diverse populations).
aged care15
This 2014 working paper presented findings
from an evaluation of CALD measures
identified in 43 data sets and assessment
instruments, and recommendations for
WHAT IS MISSING implementing the ‘top-10’ measures in aged
FROM THE PICTURE care data sets. The paper found that only 1 in
3 data sets used the very basic and minimal
ABS indicators of country of birth and
The ABS has a set of Standards and language spoken and that other measures of
Statistics on Cultural and Language linguistic diversity, including first language
Diversity that includes a Minimum spoken, or English language proficiency
Core Set of Cultural and Language were collected inconsistently, or not at all.
Indicators: country of birth, main
language other than English The paper recommended that:
spoken at home, and proficiency − data sets without CALD measures
in English. While these standards should employ, as a minimum, the ABS
exist, their use in national health measures ‘Country of birth’ and ‘Main
data collections could be improved language spoken at home’, augmented
to better understand diverse CLAD with ‘Interpreter required’, ‘Preferred
populations and identify their sex of interpreter’ and ‘Preferred
specific needs. As well, it would be language’, where the main language is
useful to have more information other than English
related to how long individuals
− data sets with selected ABS measures
have been in Australia, language
should ensure they comply with ABS data
use patterns, their need for an
collection methods, and where possible,
interpreter, parent’s country of
augment the measures to include
birth, and refugee status.
‘Interpreter required’, ‘Preferred sex of
Language barriers can lead to an interpreter’ and ‘Preferred language’,
under-representation of CALD where the main language is other than
people where English is used in English, ‘Proficiency in spoken English’
surveys or is required for self- and ‘Year of arrival’, along with 3 linked
reported information. measures that are associated with
spirituality, are also recommended for
supplemental inclusion.
• Exploring the aged care use of older people
from culturally and linguistically diverse
backgrounds: a feasibility study16
This 2016 paper again found considerable
inconsistencies and gaps in accurately
reporting on CALD data and made
recommendations for improvement
FECCA is unaware of any substantial progress
made in relation to implementing these AIHW
recommendations.

16 IF WE DON’T COUNT IT… IT DOESN’T COUNT!

7. AUSTRALIAN GOVERNMENT
MULTICULTURAL ACCESS AND
EQUITY POLICY
The Multicultural Access and Equity Policy aims The Policy does not, however, mandate specific
to ensure that Commonwealth departments data requirements. Examples of general
and agencies take primary responsibility for guidance in relation to data include:
identifying, understanding and responding to
• ‘Use CALD client data collected by your
the needs of their clients. The associated 2018
department or agency to measure the
Policy Guide17 offers guidance to non-corporate
effectiveness of multicultural access and
Government agencies in implementing the
equity initiatives.’
policy. It should be noted that corporate
Government agencies, such as the National • ‘Collect CALD data for the programmes and
Disability Insurance Agency, are out of scope of services you manage (whether you interact
the Policy. directly with them or through a contracted
service provider). Key indicators of diversity
The Policy encourages each department or
could include country of birth, ancestry
agency to have a Multicultural Access and
and/or language preferences.’
Equity Plan or to incorporate obligations under
the Policy into other strategic documents. Administrative data collected by agencies are
Departments and agencies are required to therefore neither consistent nor comparable.
report on outcomes on an annual basis to the
Department of Home Affairs.

RECOMMENDATION 6
The Australian Government should:
(a) refresh its Multicultural Access and Equity Policy and include mandated cultural,
ethnic and linguistic data collection requirements from Government departments
and agencies
(b) establish a robust mechanism for oversight of implementation and reporting.

Towards Consistent National Data Collection and Reporting on Cultural, Ethnic and Linguistic Diversity 17
 8. TOWARDS CONSISTENT NATIONAL
DATA COLLECTION AND REPORTING
8.1 CRITICAL DECISION POINTS
Given the acknowledged diversity of the 8.1.3 The application of the FAIR data principles.
Australian population, if it is agreed that The FAIR Data Principles18 (Findable,
current data on cultural and linguistic diversity Accessible, Interoperable,Reusable) were
are inadequate and are neither complete, nor drafted at a Lorentz Center workshop in
comparable nor compatible, then it is timely for Leiden in the Netherlands in 2015.
key stakeholders to develop a way forward.
The principles have since received
Critical decision points in establishing national worldwide recognition by various
consistency involve securing agreement on: organisations including FORCE11,
the National Institutes of Health (NIH)
8.1.1 The purpose of and justification for
and the European Commission as a
the collection data about Australia’s
useful framework for thinking about
cultural, ethnic and linguistic diversity.
sharing data in a way that will enable
8.1.2 Minimum indicators required to be maximum use and reuse. The Australian
collected and reported on and how to National Data Service (ANDS) and the
ensure the capacity of government and Australian Research Data Commons
non-government service providers and (ARDC) are supporting the uptake of the
research bodies to do so. FAIR Data Principles.

18 IF WE DON’T COUNT IT… IT DOESN’T COUNT!

8.1.4 Mechanisms to mandate data collection There are overseas examples of mandatory
include requirements for: diversity data collection and reporting,
particularly in health services and research,
• the collection of defined data on
when priority is placed on inclusion and
cultural, ethnic and linguistic
equity. This has involved specific legislation for
diversity in administrative data sets.
example:
• the inclusion of participants from
• United Kingdom
culturally, ethic and linguistically
The Equality Act of 2010 and the Health and
diverse backgrounds in relevant
Social Care Act of 2012 legislate the need
surveys.
for health services to provide evidence that
• the inclusion of such participants in they are working towards reducing health
social, health and medical, and other inequalities by regularly publishing equality
research (including clinical trials), information, including differences in access
particularly when such research and outcomes by ethnicity.
purports to be representative of the
• United States
Australian population as a whole.
The Patient Protection and Affordable
Mechanisms to mandate agreed diversity Care Act of 2010 requires federally
data collection are clearly required, as funded health programs to collect data on
evidenced by the inconsistency in the race, ethnicity and primary language. In
application of the National Standards, addition, the National Institutes of Health
the current reliance on ‘country of birth’ (NIH) Revitalisation Act of 1993 and NIH
and/or a language identifier, and the policy amended in 2001 require that NIH
lack of definitive requirements in the funded research must include minority
Guide to assist Australian Government ethnic groups or provide sound scientific
non-corporate entities in implementing arguments for their exclusion.
the Multicultural Access and Equity
Policy (see 7 above).

RECOMMENDATION 7
Various mechanisms are required to mandate the collection and reporting of data on
cultural, ethnic and linguistic diversity, dependent on the context, to ensure national
consistency, completeness and comparability.

Towards Consistent National Data Collection and Reporting on Cultural, Ethnic and Linguistic Diversity 19
 8.1.5 The introduction of a self-identifier. It may therefore be useful to explore the
It is evident that the term ‘CALD’ is desirability and feasibility of introducing a
not well understood or used by many self-identifier, similar to the mechanism
people from culturally and linguistically developed originally by the ABS to
diverse backgrounds who may instead facilitate self-identification by Aboriginal
refer to themselves as from ‘migrant or and Torres Strait Islander people.
refugee backgrounds’ or by terms such
The identifier could be collected along
as ‘Chinese-Australian’, ‘Lebanese-
with other measures of cultural, ethnic
Australian’ etc…
and linguistic diversity.
There is also increasing academic and
The language used to describe the
community debate about the usefulness
identifier would require considerable
of the term CALD.19 20 21 22
discussion and consultation.

RECOMMENDATION 8
Consideration should be given to the feasibility and usefulness of introducing a
self-identifier of cultural, ethnic and linguistic diversity, similar to the self-identifier for
Aboriginal and Torres Strait Islanders.

8.1.6 Consideration of an indicator of race/ These countries are, however,

ethnicity attempting to address the issues of race/
ethnicity as important markers in a
Comparable countries to Australia
range of contexts. In Australia there has
directly address the issue of race and/
been a reluctance to go down this path.
or ethnicity in data collection. In the
Even the National Standards and the
United States, it has been recognised that
Census use the term ‘ancestry’ instead.
governments, the private sector and the
not-for-profit sectors must address inter-
Given the significant importance of
ethnic and inter-racial inequities, and the
race/ethnicity in health and impacts
term ‘minority’ is widely used. In Canada
on inequalities, it is timely to have a
the term ‘visible minority’ is used in
national discussion on the usefulness
official data collection and reporting The
and viability of the introduction of a
United Kingdom has adopted the category
specific race/ethnicity variable in data
‘black, Asian and minority ethnic’ (BAME).
collection.
There has been considerable criticism of
these terms as divisive or simplistic, and
emphasising ‘otherness’.

RECOMMENDATION 9
Consideration should be given to the feasibility and usefulness of introducing a variable
focussing on race/ethnicity, particularly in health and medical research .

20 IF WE DON’T COUNT IT… IT DOESN’T COUNT!

8.2 Establishment of a national working group
FECCA calls for all relevant parties to • explore mechanisms to mandate the
acknowledge that the collection of data on collection of data on cultural, ethnic and
cultural, ethnic and linguistic diversity is linguistic diversity where appropriate.
currently inadequate - in the absence of the Such measures could include:
consistent application of agreed measures,
− legislation and/or regulation
the data are not complete, comparable or
compatible. − accreditation criteria in, for example,
aged care, disability, health and welfare
FECCA therefore proposes the establishment
services
and resourcing of a National Working Group to:
− eligibility criteria and funding
• include representatives of relevant
agreements for grants from
Commonwealth and State/Territory
governments and bodies funding
governments and agencies, the Australian
research
Bureau of Statistics, the Australian Institute
of Health and Welfare, appropriate peak − integration into mandatory reporting in
research organisations; academics and general practice software.
researchers; Human Rights Commissions;
• require the National Health and Medical
and peak multicultural organisations such
Research Council, the Australian Research
as FECCA and the National Ethnic Disability
Council and other research funding
Alliance (NEDA)
bodies, including universities, to develop
• recommend measures of cultural, ethnic mechanisms to ensure that research is
and linguistic diversity to be applied in actively inclusive of people from cultural,
administrative, survey and research data ethnically and linguistically diverse
collection and reporting backgrounds so that that research reflects
the diversity of the Australian population
• consider the feasibility of means by which
people could self-identify (similar to the • seek endorsement of the recommended
Aboriginal and Torres Strait Islander measures by the National Cabinet to ensure
identifier) national consistency through whichever
body replaces the COAG Data and Digital
• consider the development of an indicator of
Council, or another appropriate mechanism.
race and/or ethnicity

RECOMMENDATION 10
The Australian Government should establish a high-level National Working Group,
involving relevant stakeholders and expertise to develop recommendations as to how
national and jurisdictional data collection and reporting on cultural, ethnic and linguistic
diversity can be more consistent, complete and useful.

Towards Consistent National Data Collection and Reporting on Cultural, Ethnic and Linguistic Diversity 21
 ENDNOTES
1 ABS, Standards for Statistics on Cultural and Language Diversity, 1999 (cat no 1289.0)
https://www.abs.gov.au/ausstats/[email protected]/mf/1289.0 (accessed 20 Aug 2020)

2 https://www.abs.gov.au/AUSSTATS/[email protected]/95553f4ed9b60a374a2568030012e707/79fab04272992d54ca25697e0018febd/$FILE/
ATT41EIH/DIMA%20Guide_Final.pdf (accessed 12 Aug 2020)

3 Productivity Commission, Report on Government Services 2019, Chapter 14, Table 14A.17 https://www.pc.gov.au/research/ongoing/
report-on-government-services/2019/community-services/aged-care-services/rogs-2019-partf-chapter14.pdf (accessed 30 Aug 2020)
4 Productivity Commission, Report on Government Services 2020, Chapter 14, Table 14.1 and page 14.33 https://www.pc.gov.au/research/
ongoing/report-on-government-services/2020/community-services/aged-care-services/rogs-2020-partf-section14.docx (accessed 26
Aug 2020)

5 Australian Institute of Health and Welfare 2016, National Aged Care Data Clearinghouse Data Dictionary, Version 1.0. Cat. no. AGE 80.
Canberra: AIHW. https://www.aihw.gov.au/getmedia/a8d4f12e-c90c-4de3-a502-9fdfac21ebef/20344.pdf.aspx?inline=true (accessed 26
Aug 2020)

6 National Disability Insurance Agency, Cultural and Linguistic Diversity Strategy 2018 https://www.ndis.gov.au/about-us/strategies/
cultural-and-linguistic-diversity-strategy (accessed 20 Aug 2020)

7 Australian Institute of Health and Welfare, Australia’s Health 2018, Chapter 5.3 https://www.aihw.gov.au/getmedia/f3ba8e92-afb3-46d6-
b64c-ebfc9c1f945d/aihw-aus-221-chapter-5-3.pdf.aspx (accessed 31 Aug 2020)

8 Australian Institute of Health and Welfare, Australia’s Health 2020: Data Insights
https://www.aihw.gov.au/reports/australias-health/australias-health-2020-data-insights/data (accessed 31 Aug 2020)

9 Australian Institute of Health and Welfare, Australia’s Welfare 2019: data insights. Australia’s welfare series no. 14. Cat. no. AUS 226.
Canberra: AIHW. https://www.aihw.gov.au/reports-data/health-welfare-overview/australias-welfare/overview (accessed 26 Aug 2020)

10 Forrest, S. Review of Cultural and Linguistic Diversity (CaLD) Data Collection Practices in the WA Health System, Department of Health,
Western Australia, 2018 https://ww2.health.wa.gov.au/~/media/Files/Corporate/general%20documents/Population%20health/PDF/
Review-of-CaLD-Data-Collection-Report.pdf (accessed 30 Aug 2020

11 Low, L., Barcenilla-Wong, A., and Brijinath, B. Including ethnic and cultural diversity in dementia research, Medical Journal of Australia
2029; 211 (8

12 Federation of Ethnic Communities’ Councils of Australia, Review of Australian Research on Older People from Culturally and
Linguistically Diverse Backgrounds, 2015 http://fecca.org.au/wp-content/uploads/2016/02/AgedCareReport_FECCA.pdf (accessed 25
Aug 2020)

13 Smith, AB, Agar, M, Delaney, G, et al. Lower trial participation by culturally and linguistically diverse (CALD) cancer patients is largely
due to language barriers. Asia-Pacific Journal of Clinical Oncology 2018; 14: 52-60. 10.1111/ajco.12818

14 Australian Institute of Health and Welfare, Australia’s Health 2020: Data Insights. Australia’s health services no 17. Cat. No. AUS 231.
Canberra. AIHW (Chapter 2, page 19)
https://www.aihw.gov.au/getmedia/be95235d-fd4d-4824-9ade-34b7491dd66f/aihw-aus-231.pdf.aspx?inline=true (accessed 31 Aug 2020)

15 Australian Institute of Health and Welfare, Cultural and linguistic diversity measures in aged care, Working Paper 2014.
https://www.aihw.gov.au/getmedia/8ea33339-11fd-4f3a-b452-4636d282d480/17698.pdf.aspx?inline=true (accessed 31 Aug 2020)

16 Australian Institute of Health and Welfare, Exploring the aged care use of older people from culturally and linguistically diverse
backgrounds: a feasibility study, Working paper 1. Cat. no. AGE 77. Canberra: AIHW.
https://www.aihw.gov.au/getmedia/55509a73-450d-42e4-9841-b7ed6f58c3ee/20342.pdf.aspx?inline=true (accessed 1 Sept 2020)

17 Australian Government 2018, The Multicultural Access and Equity Policy Guide
https://www.homeaffairs.gov.au/mca/PDFs/multicultural-access-equity-policy-guide.pdf

18 Australian National Data Service, The FAIR data principles https://www.ands.org.au/working-with-data/fairdata

19 Mousaferiadis, P., Why ‘culturally and linguistically diverse’ has had its day https://www.diversityatlas.com.au/heres-why-cald-has-
had-its-day/ (accessed 12 Aug 2020)

20 Balachandran, N., Making a Diverse Workforce Work: Data Is Your Friend

https://www.diversityatlas.com.au/a-diverse-workforce-for-government/?fbclid=IwAR1CjYbPWfcPFqS7M4RDYNe4WTapPVeBn-
N7Elf1InNaa38X1BVKSNKhVbk (accessed 12 Aug 2020

21 Mousaferiadis, P. Beyond CALD: what lies behind the labels https://www.diversityatlas.com.au/beyond-cald-2/ (accessed 12 Aug 2020)

22 Sawrikar and Katz, How useful is the term ‘Culturally and Linguistically Diverse’ (CALD) in Australian research, practice, and policy
discourse? Social Policy Research Centre – University of New South Wales, (date unknown) https://www.aspc.unsw.edu.au/sites/www.
aspc.unsw.edu.au/files/uploads/aspc_historical_conferences/2009/paper276.pdf (accessed 12 Aug 2020)

22 IF WE DON’T COUNT IT… IT DOESN’T COUNT!

FECCA MEMBERSHIP LIST
Australian Capital Territory
Australian Capital Territory Multicultural Council

New South Wales

Ethnic Communities Council of NSW
Multicultural Communities Council of Illawarra
Hunter Multicultural Communities
Multicultural Council of Wagga Wagga
Multicultural Council of Griffith
Young and District Multicultural Association

Northern Territory
Multicultural Council of the Northern Territory

Queensland
Ethnic Communities Council of Queensland
Ethnic Communities Council of Logan
Multicultural Communities Council Gold Coast

South Australia
Multicultural Communities Council of South Australia

Tasmania
Multicultural Council of Tasmania

Victoria
Ethnic Communities Council of Victoria
Sunraysia Mallee Ethnic Communities council
North East Multicultural Association
Gippsland Ethnic Communities Council
Ballarat Regional Multicultural Council
Diversitat (Geelong Ethnic Communities Council)
Ethnic Council of Shepparton and District
Albury-Wodonga Ethnic Communities Council

Associate Members
Canberra Multicultural Community Forum
National Ethnic Disability Alliance
FECCA NATIONAL OFFICE
Unit 1, No. 4 Phipps Close,
Deakin ACT 2600
PO Box 344, Curtin ACT 2605
Phone +61 02 6282 5755
Email [email protected]
Web www.fecca.org.au
Twitter @iFECCA
Facebook @iFECCA