Data journey
The Australian Institute of Health and Welfare (AIHW) is a major national agency that collects and produces authoritative and accessible information and statistics on Australia’s health and welfare. The AIHW aims to inform and support better policy and service delivery decisions, that will lead to better health and wellbeing for all Australians. Our role is to:
- collect and manage data,
- analyse and turn data into useful information and reports, and
- make data available to all interested groups or individuals (more information on the AIHW website).
The Regional Insights for Indigenous Communities data journey
The data journey represents the key stages of the Regional Insights for Indigenous Communities data process, or the stages by which data moves from collection to use. This journey is not always a simple process. This image above is intended to represent the different stages or steps that AIHW takes to tell a meaningful story about a particular topic.
Step 1: Research, define and gather
The first step in the data journey is to gather the data. This usually includes finding out what data is available and how to collect it, or request it from data custodians.
Data sources include ABS surveys (like the 5-yearly Census of Population and Housing, and the National Aboriginal and Torres Strait Islander Health and Social surveys), administrative data sets, or published reports.
Security measures are put in place to protect the integrity of the data and the privacy of the individuals who information is included once it's been collected.
Step 2: Examine and clean
Data is then examined to understand the format, the variables available and any associated technical issues for using the data. It may be necessary to clean and reformat the data before using it for analysis. During this stage it is important to thoroughly document what was found and what was done to clean the data.
Step 3: Analyse, validate and visualise
Analysis normally involves the use of statistical methods to find patterns in data that provide meaningful insights about it.
This stage also involves validation which ensures the accuracy of the data. Without validation of data, there is a risk of basing decisions on data with imperfections that are not accurately representative of the situation being investigated.
Once data is analysed, and formatted appropriately, it can be visualised, ranging from various types of charts and maps, to a community overview dashboard, to transform the data into a more understandable format.
Step 4: Tell the story
The statistical information that comes from the analysis, validate and visualise steps should tell a meaningful story, accessible to a wide audience. This could be in through a number of different formats, including text, graphs, diagrams, maps, or other data visualisation tools.
Data access and data governance
The AIHW relies upon strong data governance rules to perform its functions effectively and maintain a trusted reputation amongst its many data suppliers, data users and other stakeholders. The AIHW applies data governance frameworks (Data Governance Framework 2021, five safes framework) when making decisions about sharing and releasing data.
The AIHW manages relationships with organisations who supply the data, and with data custodians within the AIHW, to ensure accountability and appropriate use (more information on data access and data governance at the AIHW).
Data privacy and security of data
The AIHW is committed to protecting the privacy and security of all the information that it holds. Our approach to the management of privacy is a central part in our work policies, procedures, and organisational culture. There are strict confidentiality requirements which prohibit the release of documents and/or ‘information concerning a person’ held by the AIHW unless a specific exception applies (more information on privacy and security).
Australian Bureau of Statistics
Census of Population and Housing (Census)
The Census is carried out every 5 years. It includes the standard Indigenous status question, which is asked for each household member. The Census form may be completed by one household member on behalf of others.
The 2021 Census was Australia's 18th national Census of Population and Housing, and the first to take a digital-first approach. With more than 95% of Australians participating, the 2021 Census showed a growing Aboriginal and Torres Strait Islander population. Aboriginal and Torres Strait Islander peoples represented 3.2% of the population counted – up from 2.8% in 2016, 2.5% in 2011, and 2.3% in 2006.
Following each Census, population projections for years after the Census and back cast population estimates for the years before the Census are prepared based on the new information and a set of assumptions about mortality, fertility and migration. Three series of projections are produced representing combinations of assumptions resulting in high, medium and low population growth.
Further information about the nature of the Census is available at Census methodology, 2021: Understanding data quality. More information about Aboriginal and Torres Strait Islander population estimates from the 2021 Census is available at Estimates of Aboriginal and Torres Strait Islander Australians.
National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)
The National Aboriginal and Torres Strait Islander Health Survey (NATSIHS) 2018–19 is the largest health survey of Aboriginal and Torres Strait Islander peoples, conducted by the Australian Bureau of Statistics (ABS) between July 2018 and April 2019. This survey collected information about a range of topics including long-term health conditions, disability, lifestyle factors, physical harm and use of health services. It collected information from Aboriginal and Torres Strait Islander people of all ages in non-remote and remote areas of Australia, including discrete Indigenous communities.
The NATSIHS included a sample of just over 10,500 Aboriginal and Torres Strait Islander people from about 6,500 private dwellings. Physical measurements of height, weight and waist circumference were collected from respondents aged two years and over, except women who advised that they were pregnant, and was a voluntary component of the survey. Voluntary blood pressure measurements were also collected from respondents aged 18 years and over.
Selected non-Indigenous comparisons are available from the 2017–18 National Health Survey (NHS). Time series comparisons for some indicators are available from the 2014–15 NATSISS, 2012–13 AATSIHS, 2008 NATISS, 2004–05 NATSIHS, 2002 NATSISS, 2001 NHS and the 1994 National Aboriginal and Torres Strait Islander Survey (NATSIS).
Further information is available at National Aboriginal and Torres Strait Islander Health Survey.
National Aboriginal and Torres Strait Islander Social Survey (NATSISS)
The National Aboriginal and Torres Strait Islander Social Survey (NATSISS) 2014–15 is the fourth social survey of Aboriginal and Torres Strait Islander Australians conducted by the ABS from September 2014 to June 2015. Information was collected by personal interview from approximately 11,000 Aboriginal and Torres Strait Islander people living in private dwellings in both non-remote and remote parts of Australia about a range of demographic, social, environmental and economic characteristics.
Where possible, the ABS provided recommendations for non-Indigenous data comparisons (such as the 2011–13 Australian Health Survey and the 2014 General Social Survey) and these have been adopted in this report. Further details are available at NATSISS 2014–15: Appendix 2. Time series comparisons for some indicators are available from the 2018–19 NATSIHS, 2012–13 AATSIHS, 2004–05 NATSIHS, 2002 and 2008 NATSISS and the 1994 National Aboriginal and Torres Strait Islander Survey (NATSIS), although not all data elements align across the 3 surveys.
Further information is available at National Aboriginal and Torres Strait Islander Social Survey: User Guide, 2014–15.
Australian Statistical Geography Standard (ASGS) (2021)
Most of the region types used on this website come from the Australian Bureau of Statistics’ (ABS) Australian Statistical Geography Standard (ASGS). The ASGS brings together, in one framework, all of the regions which the ABS and many other organisations use to collect, release and analyse geographically classified statistics. The ASGS ensures that these statistics are comparable, and geospatially integrated, and provides users with a coherent set of standard regions so that they can access, visualise, analyse and understand statistics. The 2021 ASGS was used for the 2021 Census of Population and Housing and progressively introduced into other ABS data collections.
The main structure of the ASGS has region types with regions that reflect where people live. Regions are relatively small in densely populated parts of Australia and relatively big in less densely populated parts to even out the variation in population size between regions.
The Indigenous structure of the ASGS has region types with regions that reflect where Aboriginal and Torres Strait Islander people live. The sizes of the regions belonging to these region types depend on the density of the Indigenous population.
ABS data is available for many different boundaries published in the ASGS. ABS Maps allows users to visualise and compare these boundaries.
Australian Institute of Health and Welfare
National Elective Surgery Waiting Times Data Collection (NESWTDC)
The National Elective Surgery Waiting Times Data Collection (NESWTDC) holds episode-level information on patients added to or removed from elective surgery waiting lists managed by public hospitals.
Data are collected for patients on elective surgery waiting lists who are yet to be admitted to hospital and for patients who have been removed from an elective surgery waiting list (for admission or another reason).
Patients on, or removed from, elective surgery waiting lists managed by hospitals operated by the Australian Defence Force, corrections authorities and Australia's external territories are not included.
For more information about the scope of this data collection, visit the AIHW Metadata Online Registry (METEOR).
National Hospital Morbidity Database (NHMD)
Held by the AIHW, the National Hospital Morbidity Database (NHMD) is a compilation of episode-level records from admitted patient morbidity data collection systems in Australian hospitals. The data supplied are based on the National Minimum Data Set (NMDS) for Admitted patient care and include demographic, administrative and length of stay data, as well as data on the diagnoses of the patients, the procedures they underwent in hospital and external causes of injury and poisoning.
The purpose of the NMDS for Admitted patient care is to collect information about care provided to admitted patients in Australian hospitals. The scope of the NMDS is episodes of care for admitted patients in all public and private acute and psychiatric hospitals, free standing day hospital facilities, and alcohol and drug treatment centres in Australia. Hospitals operated by the Australian Defence Force, corrections authorities and in Australia’s off-shore territories are not in scope but some are included.
Further information is available on the AIHW website.
National Mortality Database (NMD)
The AIHW National Mortality Database (NMD) holds records for deaths in Australia from 1964. The database comprises information about causes of death and other characteristics of the person, such as sex, age at death, area of usual residence and Indigenous status.
The data quality statements underpinning the NMD can be found in the following ABS publications:
National Non-Admitted Patient Emergency Department Care Database (NNAPEDCD)
The National Non-Admitted Patient Emergency Department Care Database (NNAPEDC) is a compilation of episode-level data for emergency department presentations in public hospitals.
The scope includes only physical presentations to emergency departments. Advice provided by telephone or videoconferencing is not in scope, although it is recognised that advice received by telehealth may form part of the care provided to patients physically receiving care in the emergency department.
For more information about the scope of this data collection, visit the AIHW Metadata Online Registry (METEOR).
National Perinatal Data Collection (NPDC)
The National Perinatal Data Collection (NPDC) is a national population-based cross-sectional collection of data on pregnancy and childbirth. The data are based on births reported to the perinatal data collection in each state and territory in Australia. Midwives and other birth attendants, using information obtained from mothers and from hospital or other records, complete notification forms for each birth.
Further information is available on the AIHW website.
Other data sources
Australian Early Development Census (AEDC)
The Australian Early Development Census (AEDC) is a national collection of data about children’s development at the time they enter their first year of full-time schooling. Data collection began in 2009 and has been repeated every 3 years since using an Australian version of the Canadian Early Development Instrument. The AEDC can be used as a guide to planning and service provision, highlighting areas working well and areas requiring improvement or development.
The AEDC uses questions that are linked closely to 5 domains (see table below).
AEDC domains
|
Domain |
Domain description |
|---|---|
|
Physical health and wellbeing |
Children’s physical readiness for the school day, physical independence and gross and fine motor skills. |
|
Social competence |
Children’s overall social competence, responsibility and respect, approach to learning and readiness to explore new things. |
|
Emotional maturity |
Children’s pro-social and helping behaviours and absence of anxious and fearful behaviour, aggressive behaviour and hyperactivity and inattention. |
|
Language and cognitive skills (school-based) |
Children’s basic literacy, advanced literacy, basic numeracy, and interest in literacy, numeracy and memory. |
|
Communication skills and general knowledge |
Children’s communication skills and general knowledge based on broad developmental competencies and skills measured in the school context. |
Results are reported against 3 development groupings based on percentile cut-offs from the 2009 AEDC results:
- developmentally on track
- developmentally at risk
- developmentally vulnerable.
For more information on the domains and domain characteristics, refer to the fact sheet About the AEDC domains or see the AEDC website.
Australia and New Zealand Dialysis and Transplant Registry (ANZDATA)
The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) is a clinical quality registry that collects and produces a wide range of statistics relating to the outcomes of treatment of those with end-stage kidney failure. ANZDATA has been in operation since 1977 and all dialysis and transplant services, in Australia and New Zealand, contribute data to The Registry. The fundamental purpose of ANZDATA is to report on the incidence, prevalence and outcomes of dialysis and transplant treatment for patients with end stage kidney disease across Australia and New Zealand.
The ANZDATA Registry operates under the South Australian Health and Medical Research Institute (SAHMRI). For more information, refer to the ANZDATA website.
BreastScreen Australia
The National Program for the Early Detection of Breast Cancer, now known as BreastScreen Australia, was established by the Commonwealth and the states and territories in 1991 and is now recognised as one of the most comprehensive population-based screening programs in the world.
BreastScreen Australia aims to reduce illness and death resulting from breast cancer through organised screening to detect cases of unsuspected breast cancer in women, thus enabling early intervention. The BreastScreen Australia Data Dictionary is intended to be the authoritative source of data definitions used by BreastScreen Australia to meet the need for national consistency in data collected for program monitoring and evaluation, and for accreditation of BreastScreen Australia services.
Women aged 40 and over are eligible for free mammograms every 2 years, and women aged 50–74 are actively targeted to participate in the program.
More information is available via the AIHW BreastScreen Australia monitoring report, or at the Department of Health and Aged Care website.
National Assessment Program – Literacy and Numeracy (NAPLAN)
The Australian Curriculum, Assessment and Reporting Authority (ACARA) is an independent statutory authority and receives direction from the Education Council. The Education Council, in collaboration with jurisdictional and federal health ministers endorsed ACARA’s work plan and on the direction for the National Assessment Program (NAP). ACARA runs national student testing, including the National Assessment Program – Literacy and Numeracy (NAPLAN).
NAPLAN is an annual national assessment for students in Years 3, 5, 7, and 9. All students are expected and encouraged to participate in testing that assesses reading, writing, language conventions (spelling, grammar and punctuation) and numeracy. NAPLAN material has been developed with involvement from all government and non-government education authorities.
NAPLAN is used to determine the literacy and numeracy competencies of young Australians, which provide a critical foundation for future learning and community participation. The assessments provide information about individual student performance to parents and schools. They also give schools and states and territories an opportunity to evaluate education programs and areas to be prioritised for improvement.
More information on NAPLAN is available at the National Assessment Program website.
National Health Workforce Data Set (NHWDS)
The National Health Workforce Data Set (NHWDS) is a combination of registration and survey data collected through the registration renewal process for registered health practitioners. The data from this annual registration process, together with data from a workforce survey that is voluntarily completed at the time of registration, forms the NHWDS.
Data in the NHWDS includes demographic and employment information for registered health professionals. A very small proportion of practitioners complete their workforce surveys on paper forms rather than online. The Australian Health Practitioner Regulation Agency (AHPRA) provides the completed paper survey forms to the Department of Health and Aged Care for scanning, cleansing, and merging the paper-based survey data into the online registration and survey dataset.
For more information about the NHWDS, refer to the Department of Health and Aged Care website.
Medicare Benefits Schedule (MBS)
The Medicare Benefits Schedule (MBS) data collection contains information on services that qualify for a benefit under the Health Insurance Act 1973 and for which a claim has been processed. The database comprises information about MBS claims (including benefits paid), patients and service providers.
Through Medicare (MBS items 715,228, 92004, 92016, 92011 and 92023), Aboriginal and Torres Strait Islander people can receive health checks from their doctor, as well as referrals for follow-up services.
The aim of the health checks for First Nations people is to encourage early detection and treatment of common conditions that cause ill health and early death—for example, diabetes and heart disease.
Further information is available on the AIHW website.
Communities and locations
More information about the communities and other locations, referenced throughout the RIFIC website, can be found on the about page.