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Future Aboriginal and Torres Strait Islander Health Surveys - Have Your Say

Discussion paper for Aboriginal and Torres Strait Islander people to give feedback on the proposed Aboriginal and Torres Strait Islander health survey

Reference period
2020
Released
10/03/2020
Next release Unknown
First release

Overview

The Australian Bureau of Statistics acknowledges the traditional custodians of country throughout Australia and recognises their continuing connection to land, waters and community. We pay our respects to them and their cultures, and Elders, both past and present.

The ABS is committed to early and ongoing conversations with Aboriginal and Torres Strait Islander people to help shape an upcoming health survey. This paper provides information about the upcoming survey and seeks your feedback on a range of topics.

You may also be interested in attending an interactive online workshop or completing an online self-paced consultation package, talking with an engagement manager, or completing our online survey. For further details, see How Can I Have My Say?

The ABS would like to thank all who have given their voice to the consultation process to date. Their knowledge and experiences have provided invaluable insights, and their contributions are forming part of an essential dialogue towards a greater understanding of Aboriginal and Torres Strait Islander peoples’ data needs.

Introduction

In August 2019, the Commonwealth Minister for Health announced a new national Intergenerational Health and Mental Health Study (IHMHS). The Study will run over three years from late 2020 to 2023 and comprise surveys of health, nutrition and physical activity, and an optional biomedical survey (see Appendix 1: Overview of the IHMHS). There will also be a National Survey of Mental Health and Wellbeing, which was last conducted in 2007. As was the case for the Australian Health Survey (AHS) in 2011-2013, the ABS’ Aboriginal and Torres Strait Islander survey program will be expanded under the IHMHS to accommodate the collection of this information across the Aboriginal and Torres Strait Islander population, from 2022 to 2023.

The ABS is committed to early and ongoing conversations with Aboriginal and Torres Strait Islander peoples to ensure all surveys are done in a culturally appropriate way and reflect the priorities, values and diversity of Aboriginal and Torres Strait Islander peoples. Discussions with several Aboriginal Community Controlled Health Organisations (ACCHOs) have occurred, alongside the considerable advice and guidance provided to ABS by their national body (NACCHO). Their advice is influencing our approach to engagement with Aboriginal and Torres Strait Islander communities, including in developing the content of this paper. The ABS Round Table on Aboriginal and Torres Strait Islander Statistics (consisting of Aboriginal and Torres Strait Islander peoples from across the country) has also provided invaluable feedback and direction for how we should undertake this focussed engagement.

The mental health survey component of the IHMHS is a total population survey which does not have an Aboriginal and Torres Strait Islander specific component, although the topic of mental health is part of the ABS’ engagement for the Aboriginal and Torres Strait Islander Health Survey. This is discussed further in the survey content section of this paper.

Now we need to hear from you to help us shape the Aboriginal and Torres Strait Islander survey components which will be undertaken as part of the IHMHS. We want to hear about your information needs and how the data should be collected to help make the survey culturally appropriate and successful and we’re seeking input on three broad issues:

  1. Survey content
  2. Biomedical tests
  3. Data integration
     

This discussion paper provides one avenue for consultation and should be considered as the beginning of a conversation rather than the conclusion.

How can I have my say?

The ABS is committed to providing a range of opportunities for Aboriginal and Torres Strait Islander people to provide feedback and we are asking you to tell us your thoughts and suggestions on all elements of the proposed health survey including how and what information should be collected.

There are many ways you can provide your feedback to us:

Attend an online workshop

Between September and November 2020, the ABS will be running a series of online workshops. The online workshops are interactive and provide an opportunity for you to share your feedback and ideas on three broad topics:

  • Health survey content
  • Biomedical testing
  • Data integration


For more information or to register please visit ETM Perspectives, or contact us at coeatsis@abs.gov.au.

Online self-paced consultation package

For people who aren't able to attend a workshop, an online self-paced consultation package is available. For more information or to register please visit ETM Perspectives, or contact us at coeatsis@abs.gov.au.

Connect with an engagement manager

The ABS has Aboriginal and Torres Strait Islander Engagement Managers in each state and territory who are keen to have discussions with you.

Complete our eSurvey

The electronic survey covers a range of key topics and discussion points as well as the ability to provide general comments. For those interested, the survey can be accessed here ABS Consultation Hub

Write to us

In addition to, or instead of, attending an online workshop or completing an online self-paced consultation package, the ABS invites people to submit written feedback in response to this discussion paper.

Submissions are welcome until 31 March 2021 and can be forwarded electronically or in hard copy using the contact details below.

Email: coeatsis@abs.gov.au

Or by post to:

Director of CoEATSIS

Locked Bag 10

Belconnen ACT 2616

A report on the engagement undertaken will be made available at the end of the consultation.

Health related survey content

The Aboriginal and Torres Strait Islander components of the IHMHS are expected to start collecting information from participants in mid-2022. The proposed components include:

  • National Aboriginal and Torres Strait Islander Health Survey (NATSIHS) – a general health survey which collects information about health conditions, risk factors and health behaviours
  • National Aboriginal and Torres Strait Islander Nutrition and Physical Activity Survey (NATSINPAS) – a survey which collects detailed information about dietary intake and physical activity.
     

Both of these surveys will include an option to volunteer for biomedical testing.

We expect the first release of data will be in December 2023.

As a health focused study, the majority of questions in the IHMHS will be about health topics. However, as in previous health surveys it will include some social topics such as language, culture, education and employment, which provides for regular national reporting (including Closing the Gap reporting) on these topics.

The topics included in previous Aboriginal and Torres Strait Islander health surveys are listed in Appendix 2. There may also be scope to expand on the social content that would usually be collected in an ABS health survey. Topics included in previous Aboriginal and Torres Strait Islander social surveys are listed in Appendix 3. Detailed data item lists and questionnaires from previous health and social surveys can be accessed via Appendix 4.

Collection of mental health related information

The IHMHS includes the National Survey of Mental Health and Wellbeing which uses a diagnostic tool for the assessment of mental disorders known as the Composite International Diagnostic Interview (CIDI). The survey was designed to provide prevalence estimates of selected lifetime mental disorders at the national level, and was last conducted in 2007.

The ABS recognises the importance of having current data about mental health conditions experienced by Aboriginal and Torres Strait Islander peoples. To collect this, the CIDI needs testing, and likely modification, to make it both culturally appropriate and able to adequately capture relevant social and cultural determinants of mental health for Aboriginal and Torres Strait Islander peoples. The existing CIDI is a thorough assessment tool which can place a significant burden on participants, and it has not been tested with Aboriginal and Torres Strait Islander people living in remote areas.

Equally important is that the data collection process is modified to accommodate a flexible approach and ensure there are adequate support structures incorporated for Aboriginal and Torres Strait Islander people when responding to a mental health survey. For these reasons, the IHMHS does not have an Aboriginal and Torres Strait Islander specific mental health prevalence survey. The ABS will continue to working closely with the Department of Health, the National Indigenous Australian's Agency and other stakeholders to plan for for future collection of Aboriginal and Torres Strait Islander mental health data, informed by further research.

It should also be noted that while mental health was not the sole and specific focus of the most recent National Aboriginal and Torres Strait Islander Health Survey (2018-19), it included various data items relating to mental health and wellbeing, including:

  • Whether ever been diagnosed with a mental health condition
  • Type of diagnosed mental health condition
  • Whether has psychological disability
  • Accessed/used health services for mental health condition
  • Whether been to a counselling service in the last 12 months
  • Reason(s) didn't go to counsellor in the last 12 months
  • Whether consulted a psychologist in the last 2 weeks
  • Social and emotional wellbeing
     

The subject of mental health is part of the engagement we are currently undertaking for the broader IHMHS.

In your response to this paper, the ABS is seeking your input on:

  • The key emerging health (including mental health) issues facing Aboriginal and Torres Strait Islander people today.
  • What are your priority data needs, including what is currently not available?
  • What information should or shouldn’t be collected? (The topics listed in Appendices 2 and 3 may be used as a guide).

Biomedical testing

Voluntary biomedical testing will be included in the National Health Measures component of the IHMHS. Biomedical testing involves taking small samples of blood, urine or saliva to test for things like diabetes, cholesterol levels, kidney disease, and nutrient levels such as iron, folate and Vitamins B12 and D. All samples will be disposed of at the end of the survey by the pathology company undertaking the testing, but participants may be able to choose to have their samples stored under secure and culturally appropriate governance arrangements for additional testing and research. Participants will be provided with the information to ensure they know what they are consenting to and what tests will be undertaken.

Biomedical testing was part of the 2012-13 AHS’ NATSIHS and NATSINPAS survey components and was undertaken with ethics approvals from numerous ethics committees. Results from the tests were returned to the participant and with consent, to their doctor and/or medical clinic. Those with high risk levels, along with their clinician, were contacted directly by the pathologist to initiate necessary care. The collection in 2012-13 was only undertaken with adults in an attempt to build trust with the Aboriginal and Torres Strait Islander community before potentially extending the opportunity to children. The possible inclusion of children for the upcoming biomedical collection is part of the conversation we are seeking to have with Aboriginal and Torres Strait Islander communities.

The tests conducted in the 2012-13 NATSIHS* included:

TopicTests
Cardiovascular DiseaseCholesterol, Triglyceride, HDL, LDL, Apolipoprotein B
DiabetesFasting Plasma Glucose, HbA1c
Kidney DiseaseAlbumin, eGFR, Creatinine
Liver FunctionALT, GGT
SmokingCotinine
NutritionFolate, B12, Sodium, Potassium, Vitamin D, Iodine, Iron
OtherC-reactive protein (CRP)

* See Appendix 5 for details.
 


Biomedical testing has several benefits including:

  • Improving the health status of people by informing decisions made across the health sector
  • Providing insights into the relationship between biomedical results, behavioural risk factors and rates of chronic disease
  • Helping develop and improve preventative health assessment measures for chronic diseases, e.g. diabetes, cardiovascular disease, kidney disease.
  • Contributing to changes in health policy and clinical practice
     

In addition to the biomedical tests and potential storage of samples, the ABS is also seeking input on whether to consider including an option for genomic testing on stored samples, subject to stringent ethical and governance requirements. In some of our discussions to date, support has been voiced from Aboriginal and Torres Strait Islander peoples that they be offered the opportunity to be involved in genetic research as they can see there are potential benefits for their community. In 2011, at a Lowitja Institute Roundtable on genetic research, Professor Emma Kowal noted, “Genetic research can provide insight into why some people from the same family respond differently to treatments; why some people are resistant to disease and others susceptible to the same disease, even when they might live in identical environments; and can provide clues about how diseases develop.” Kowal E, and Anderson I. Genetic Research in Aboriginal and Torres Strait Islander Communities: Continuing the Conversation, The Lowitja Institute, 2012

We acknowledge there are some concerns around the potential misuse of genomic testing due in part to historical misrepresentation and the feeling across the community that genomic testing has never worked in favour of Aboriginal and Torres Strait Islander peoples. As part of the consent process for people choosing to participate in the biomedical collection, the ABS will need to clearly communicate how the samples will be used, stored, accessed and disposed. To inform this we are seeking your input to help us understand how to respectfully incorporate Aboriginal and Torres Strait Islander peoples’ cultural beliefs into the communication and consent process.

In your response to this paper, the ABS is seeking your input on the following biomedical test items:

  1. How important is it for Aboriginal and Torres Strait Islander people to participate in a voluntary biomedical collection and what barriers are there to their participation?
  2. What do you think are the potential benefits and/or risks to Aboriginal and Torres Strait Islander people from analysis of biomedical tests data?
  3. What ethics, consent and/or governance processes are needed for a biomedical collection to occur in a culturally appropriate way?
  4. Sensitivities people are likely to have with the collection of biomedical samples
  5. What tests should be included? Why?
  6. Should children be included in the collection of samples?
  7. Should sample storage under appropriate governance, be considered to allow for future tests?
  8. Should consent for sample storage allow an option for genomic testing, under appropriate governance?

Data integration

Data integration brings together information from multiple sources to help answer important questions about people, families, places, businesses or life events. Combining health survey results with Census and administrative government data can help provide a better picture of the health of Aboriginal and Torres Strait Islander peoples.

Linked (or integrated) data that is used for analysis in data integration projects is de-identified, meaning it does not contain identifying information like names and addresses. Other important measures are taken to ensure the data is not likely to identify an individual and all information is protected under the Census and Statistics Act.

  • Data integration has a range of benefits including:
  • Better understanding of people’s lived experiences
  • Improved information for planning services for the future
  • More local level data
  • Better use of existing data, and replacing some data collected in surveys, to help reduce the burden of surveys on participants.
     

More information about data integration can be found on the ABS website at www.abs.gov.au/dataintegration.

The Multi-Agency Data Integration Project (MADIP)

One way the ABS currently integrates data is through the Multi-Agency Data Integration Project (MADIP). MADIP is a secure approach for combining information from across areas of government like healthcare, education, government payments, personal income tax, Census and other population demographic data over time.

Current MADIP data sources

Apprenticeships *Early Childhood Development *Census *Medical PractitionersCensus *
Australian Apprenticeships Incentives Program and Training ContractsAustralian Early Development CensusCensus of Population and HousingCentralised Register of Medical PractitionersAustralian Census Longitudinal Dataset
Deaths *Medical ServicesMedicareHealth *Higher Education *
Death RegistrationsMedicare Benefits Scheme (MBS)Medicare Enrolments Database (MEDB)National Health Survey (NHS)Higher Education Information Management System (HEIMS)
Medication UseTaxWelfare *MigrationDisability, Ageing, and Carers *
Pharmaceutical Benefits Scheme (PBS)Personal Income Tax (PIT)Social Security and Related Information (SSRI)Migrant DataSurvey of Disability, Ageing, and Carers

* Includes Indigenous status
 


The ABS is one of six Australian Government agencies that work together to manage MADIP. The MADIP allows authorised researchers to better understand socio-economic outcomes and trends to help inform policy, services and programs to make sure they are valuable to the people and communities who need them. Information from MADIP cannot be used for compliance purposes, like checking if you are paying enough tax, or whether you are eligible for government payments.

More information about MADIP can be found on the ABS website at www.abs.gov.au/madip.

Privacy and security

The ABS takes data security very seriously and prioritises protecting our respondents’ privacy. We fully comply with the Privacy Act 1988, the Australian Privacy Principles and all other relevant legislation.

Data is only integrated where there is a clear public benefit and can only be used for statistical and research purposes. The ABS enables integration of the datasets that are part of MADIP, but these datasets are not held together. They are stored separately and information from them is only brought together for specific approved projects and the ABS uses a secure environment for access and storage. Authorised researchers are only granted access to anonymous information, and only the information they need for their project. The ABS checks data outputs before they are shared. The ABS does not release information in a manner likely to enable the identification of an individual.

Access to MADIP data is only available to authorised users. Before anyone can access integrated data, the project must be approved by all relevant data custodians and the ABS. All projects must meet the requirements of the ‘Five Safes Framework’ which is in line with international best practice and designed to identify and manage any risks to keep the information safe and secure.

The Five Safes Framework covers separate but related dimensions:

  • Safe people: Is the researcher authorised to access and use the data appropriately?
  • Safe projects: Is the data to be used for an appropriate purpose?
  • Safe settings: Does the access environment prevent unauthorised use?
  • Safe data: Has appropriate and sufficient protection been applied to the data?
  • Safe output: Are the statistical results non-disclosive?
     

Opportunity to integrate Health Survey and administrative data

In December 2019, the first results from the 2018-19 NATSIHS were released. There is a lot of interest from researchers about combining NATSIHS data with government administrative data, such as through MADIP. Currently, no NATSIHS or National Aboriginal and Torres Strait Islander Social Survey (NATSISS) data are used in any data integration project.

The NATSIHS cannot collect everything about peoples’ health, or associated social and economic circumstances. It also represents one point in time, which means there can be limitations in using it to assess outcomes and impact, and telling stories about peoples’ life journeys. Integrating NATSIHS data would mean more information is available with the survey data, which would allow researchers to see more complete pictures of people’s health and wellbeing. For example, a topic that could be explored is whether use of medical services and medications follows the best care pathways (eg. using Medicare and PBS data). Data integration could also enable more complex analysis and open up more possibilities for local level data. We would also be in a better position to explore what information can and can’t be gained from administrative data to reduce the burden of future surveys, reduce survey length, or create space in surveys for the data that communities need.

In your response to this paper, the ABS is seeking your input on the following data integration items:

  • What are your thoughts about integrating NATSIHS and future surveys with MADIP?
  • What integrated information would be most useful for you or your organisation?
  • What data governance arrangement is needed to manage access to integrated NATSIHS data?
  • What topics would be important to research?
  • Could data integration help with other data gaps that you are aware of?
  • What is needed to make integrated data accessible?
  • Are there any particular risks you are concerned about in keeping data safe?

Appendix 1 - Overview of the IHMHS

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    The Intergenerational Health and Mental Health Study (IHMHS)

     A diagram outlining the studies included in the Intergenerational Health and Mental Health Study (IHMHS)

    The Intergenerational Health and Mental Health Study (IHMHS)

    The Diagram breaks down how individual health and mental health surveys are captured in the overall Intergenerational Health and Mental Health Study (IHMHS). There are seven components in total. The National Study of Mental Health and Wellbeing will have a follow up in the first and second year.
    The National Health Study includes the National Health Survey, and the National Aboriginal and Torres Strait Islander Health Survey. The National Nutrition and Physical Activity Study includes the National Nutrition and Physical Activity Survey and the National Aboriginal and Torres Strait Islander Nutrition and Physical Activity Survey.
    The National Health Study and the National Nutrition and Physical Activity Study both feed into a third study — The National Health Measures Study. This study includes two voluntary surveys — the National Health Measures Survey and the National Aboriginal and Torres Strait Islander Health Measures Survey.

    * Includes voluntary biomedical component

    Appendix 2 - Topics included in previous Aboriginal and Torres Strait Islander health surveys

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    Health status and conditions

    TopicCollected in 2012-13Collected in 2018-19
    Self-assessed healthYesYes
    Social and emotional well-beingYesYes
    DisabilityYesYes
    AsthmaYesYes
    ArthritisYesYes
    CancerYesYes
    CardiovascularYesYes
    DiabetesYesYes
    SightYesYes
    HearingYesYes
    Kidney diseaseYesYes
    OsteoporosisYesYes
    Mental Health conditionsN/AYes
    Other long-term conditionsYesYes
    MedicationsN/AYes
    Recent injuriesYesN/A
    Time away from study and workYesN/A

    Health related actions

    TopicCollected in 2012-13Collected in 2018-19
    BreastfeedingYesYes
    ContraceptionYesN/A
    Hospital visitsYesYes
    Private health insuranceYesYes
    Usual and preferred healthcare providerYesYes
    Doctor consultationsYesYes
    Oral healthYesYes
    Other health professionalsYesYes

    Physical measures

    TopicCollected in 2012-13Collected in 2018-19
    Blood pressureYesYes
    Physical measuresYesYes
    Body massYesYes
    Hearing testN/AYes

    Health risk factors

    TopicCollected in 2012-13Collected in 2018-19
    AlcoholYesYes
    Smoker statusYesYes
    Tobacco consumptionYesYes
    Substance useYesYes
    ImmunisationYesYes

    Nutrition and physical activity

    TopicCollected in 2012-13Collected in 2018-19
    Diet - generalYesYes
    Diet – 24-hour food recallYesN/A
    Physical activity - generalYesYes
    Physical activity – measured pedometer dataYesN/A

    Social

    TopicCollected in 2012-13Collected in 2018-19
    LanguageYesYes
    Educational attainment*YesYes
    Current studyYesYes
    Employment*YesYes
    IncomeYesYes
    Cultural identificationYesYes
    Family stressorsYesN/A
    DiscriminationYesYes
    Removal from natural familyYesYes
    Experiences of violenceN/AYes
    Personal pensions and allowancesYesYes

    * The health survey is a data source for Closing the Gap targets on these tropics.

    Appendix 3 - Topics included in previous Aboriginal and Torres Strait Islander social surveys

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    Language and culture

    TopicCollected in 2008Collected in 2014-15
    Speaking/learning Australian Indigenous languageYesYes
    Cultural identificationYesYes
    Cultural participationYesYes
    Cultural educationYesYes

    Social contact and community strength

    TopicCollected in 2008Collected in 2014-15
    Social contactYesYes
    Social networksYesYes
    Social supportYesYes
    Sense of efficacyYesYes
    Level of trustYesYes
    Perceptions of community leadership and changeN/AYes
    Child sportsYesYes
    Child positive life eventsYesYes
    Child careYesYes

    Housing, mobility and transport

    TopicCollected in 2008Collected in 2014-15
    HomelessnessN/AYes
    Housing utilisation and overcrowdingYesYes
    Household facilities, maintenance and structural problemsYesYes
    Housing tenureYesYes
    Housing mobilityYesYes
    Access to transportN/AYes
    Transport useYesYes
    Possession of a driver’s licenceYesYes
    Community facilities availableYesYes

    Stressors, safety, law and justice

    TopicCollected in 2008Collected in 2014-15
    Personal and family stressorsYesYes
    Barriers to service providersYesYes
    Unfair treatmentYesYes
    Bullying and unfair treatment at schoolYesYes
    Removal from natural familyYesYes
    Feelings of safetyYesYes
    Contact with the justice systemYesYes
    Experiences of violenceYesYes

    Health

    TopicCollected in 2008Collected in 2014-15
    Self-assessed healthYesYes
    Social and emotional well-beingYesYes
    Long-term health conditionsN/AYes
    Disability statusYesYes
    Infant and maternal healthYesYes
    BreastfeedingYesYes
    Child health and nutritionYesYes
    Child sleepYesYes
    Adult nutritionN/AYes
    Smoker statusYesYes
    AlcoholYesYes
    Substance useYesYes
    Patient experienceN/AYes

    Education, employment and income

    TopicCollected in 2008Collected in 2014-15
    Educational attainment*YesYes
    Current studyYesYes
    Vocational trainingYesYes
    Child educationYesYes
    Employment*YesYes
    Difficulties finding workYesYes
    IncomeYesYes
    Personal pensions and allowancesYesYes
    Financial stressYesYes

    * The social survey is a data source for Closing the Gap targets on these topics.

    Appendix 5 - Biomedical tests in the 2012-13 NATSIHS

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    Cardiovascular disease

    BiomarkerRationale
    Total cholesterolTo estimate prevalence of cardiovascular disease risk factors
    Fasting triglycerides
    Fasting LDL and HDL cholesterol
    Apolipoprotein B

    Diabetes

    BiomarkerRationale
    Fasting plasma glucoseTo estimate prevalence of diabetes and impaired fasting glucose
    Glycated haemoglobin HbA1cTo monitor diabetes control

    Chronic kidney disease

    BiomarkerRationale
    Estimated Glomerular Filtration Rate (eGFR)To estimate prevalence and severity of kidney damage
    Urinary albumin creatinine ratio (ACR)To estimate prevalence of albuminurea, an early indicator of kidney damage

    Liver function

    BiomarkerRationale
    Liver function tests (GGT and ALT)To provide an indication of prevalence of liver damage

    Risk factors

    BiomarkerRationale
    Serum cotinineTo estimate prevalence of active and passive smoking

    Nutrition status

    BiomarkerRationale
    Erythrocyte folateTo monitor the effectiveness of folate food fortification programs and estimate prevalence of folate deficiency
    Serum folate
    Serum B12To estimate prevalence of vitamin B12 deficiency
    Urinary sodium and potassium concentrationTo measure population trends in sodium and potassium intakes
    Serum 25(OH)DTo estimate prevalence of vitamin D deficiency
    Urinary iodineTo monitor the effectiveness of iodine food fortification programs and estimate prevalence of iodine deficiency
    Serum ferritinTo estimate prevalence and severity of iron deficiency
    Serum transferrin receptor
    Haemoglobin
    Inflammation marker (CRP)To assist with iron interpretations

    History of changes

    Show all

    30/11/2020 - Extended cut off date for written feedback from 30 November 2020 to 31 March 2021

    16/09/2020 - New details on online workshops and self-paced consultation package has been added

    Previous catalogue number

    This release previously used catalogue number 4740.0