Data sources

Australian Institute of Health and Welfare

Australian Burden of Disease Database

The Australian Burden of Disease Database contains aggregated output of burden of disease metrics from the Australian Burden of Disease Study. This includes Years of life lost (YLL), Years lived with disability (YLD) and Disability-adjusted life years (DALY) for around 200 diseases and injuries.

The database is updated and added to following the completion of each Australian Burden of Disease Study. It currently includes national estimates of disease burden and risk factor attribution for 2003, 2011, 2015 and 2018. Subnational estimates of disease burden are available for state/territory, remoteness and socioeconomic group for 2011, 2015 and 2018. Indigenous-specific estimates of disease burden and risk factor attribution are available for 2003, 2011 and 2018.

Data to develop the estimates for the Aboriginal and Torres Strait Islander population are obtained from many different sources. Deaths data for the fatal burden are sourced from the National Mortality Database, while data for the non-fatal burden come from a variety of sources including national data sets (such as the National Hospital Morbidity Database), national surveys and a number of epidemiological studies. Population estimates underpinning all estimates are sourced from the Australian Bureau of Statistics (ABS).

The Indigenous component of the Australian Burden of Disease Study 2018 provides estimates of the total, non-fatal and fatal burden of disease and injuries for the Aboriginal and Torres Strait Islander population for 2018, 2011 and 2003 using the DALY (disability-adjusted life years) measure. It also provides estimates of the burden attributable to 39 risk factors and estimates of the gap in disease burden between Indigenous and non-Indigenous Australians.

The methods used to produce Indigenous burden of disease estimates are consistent with those used to produce national estimates. However, this was not always possible due to differences in data availability, data quality and population size and characteristics, particularly at the subnational level. Existing data about Indigenous people are subject to a number of limitations in data quality and availability. This includes under-identification of Indigenous people in administrative data sets (and changes in the propensity of people to identify as Indigenous over time); and lack of available data on the prevalence of certain diseases in the Indigenous population.

Further information is available at Australian Burden of Disease Study 2018: impact and causes of illness and death in Aboriginal and Torres Strait Islander people.

Disability Services National Minimum Data Set (DSNMDS)

The Disability Services National Minimum Data Set (DSNMDS) is a national collection on disability support services provided under the National Disability Agreement (NDA). The DSNMDS is compiled by the AIHW from data provided by states and territories and the Australian Government Department of Social Services (DSS). Information collected includes type of service, details of service users, primary disability, residential service type and demographic information.

Some outlets do not report on all service users, and it is not possible to accurately estimate the missing number of service users. Services provided under the NDA vary between jurisdictions.

The latest data quality statement for the DS NMDS is available at Disability Services National Minimum Data Set (DS NMDS) - Data Quality Statement.

National Community Mental Health Care Database (NCMHCD)

The National Community Mental Health Care Database (NCMHCD) compiled by the AIHW contains data on service contacts provided by specialised public mental health services in Australia. A mental health service contact is the provision of a clinically significant service by a specialised mental health service provider for patients. Any one patient can have one or more service contacts. Service contacts include face-to-face communication as well as telephone, video link or other forms of direct communication. Service contacts can be with the patient or with a third party, such as a carer or family member, or other professional or mental health workers or other service providers. States and territories supply this data annually, and the AIHW publishes the data annually in the Mental health services in Australia report.

Data elements in the collection include demographic characteristics of patients, clinical information, principal diagnosis, mental health legal status, and service provision.

Indigenous status data in the NCMHCD should be interpreted with caution due to the varying quality of Indigenous identification across jurisdictions reporting to the database.

The data quality statement for the NCMHCD is available at Community mental health care NMDS 2017–18: National Community Mental Health Care Database, 2019; Quality Statement.

National Hospital Morbidity Database (NHMD)

The National Hospital Morbidity Database (NHMD), is a collection that includes all completed admitted patient episodes in public and private hospitals across Australia. A record is included for each separation, not for each patient, so patients who separated more than once in the year have more than one record in the NHMD. Separation refers to the episode of admitted patient care, which can be a total hospital stay (from admission to discharge, transfer or death) or a portion of a hospital stay beginning or ending in a change of type of care (for example, from acute care to rehabilitation).

Data are supplied by state and territory health authorities and compiled by the AIHW annually. Information includes administrative data, length of stay, diagnosis, type of care (for example, psychiatric care), causes of injury and demographic data.

Caution needs to be taken with comparison over time for some conditions due to changes in admission practices over the reporting period in some jurisdictions, coding changes or care type changes. The number and pattern of hospitalisations can be affected by differing admission practices among the jurisdictions and from year to year, and differing levels and patterns of service delivery.

Some jurisdictions have slightly different approaches to the collection and storage of the standard Indigenous status question and categories in their hospital collections. The incompleteness of Indigenous identification means the number of hospital separations recorded as Aboriginal and Torres Strait Islander is an underestimate of hospitalisations involving Aboriginal and Torres Strait Islander people. Indigenous status data should be interpreted with caution due to the likely under-identification of Indigenous Australians.

The data quality statement for the NHMD Admitted Patient Care 2016–17 is available at Data quality statement: Admitted Patient Care 2016-17.

National Mortality Database (NMD)

The National Mortality Database (NMD) is held by the AIHW. The cause of death data are sourced from state and territory Registrars, the National Coronial Information System (NCIS) and compiled and coded by the ABS.

The Cause of Death Unit Record Files are provided to the AIHW by the Registries of Births, Deaths and Marriages in each state and territory and the NCIS. The cause of death data are compiled and coded by the ABS to the International Statistical Classification of Diseases and Related Health Problems (ICD) and maintained at the AIHW in the NMD. Registration of deaths is the responsibility of the Registry of Births, Deaths and Marriages in each state and territory.

The NMD comprises information about causes of death and demographic characteristics such as sex, age at death, area of usual residence and Indigenous status.

The Aboriginal and Torres Strait Islander status of a deceased person is captured through the death registration process; however, it is recognised that not all such deaths are captured through these processes, leading to under-identification. Also, data on deaths by suicide in Indigenous people have been compiled by jurisdiction of usual residence for New South Wales, Queensland, Western Australia, South Australia and the Northern Territory only. Data for Victoria, Tasmania and the Australian Capital Territory have been excluded in line with national reporting guidelines.

Data quality statements relevant to the AIHW NMD can be found at ABS Quality declaration summary for Causes of death, Australia and ABS Quality declaration summary for Deaths, Australia.

Further information on the AIHW NMD is available at National Mortality Database.

National Non-Admitted Patient Emergency Department Care Database (NNAPEDCD)

The National Non-Admitted Patient Emergency Department Care Database (NNAPEDCD) is a compilation of episode-level data for emergency department presentations in public hospitals. Non-admitted patients are patients who do not go through a hospital’s formal admission process. Most patients who receive care in emergency departments are non-admitted patients, and they may subsequently become admitted.

All state and territory health authorities collect a core set of nationally comparable information on emergency department presentations in public hospitals within their jurisdiction, and the AIHW compiles this data annually. States and territories provide data for the NNAPEDCD using either the Non-admitted patient emergency department care National Minimum Data Set (NAPEDC NMDS) or the NAPEDC Data Set Specification (DSS).

NNAPEDCD information includes type of presentation (for example, mental health-related), principal diagnosis, state/ territory and demographic information.

Mental health-related ED presentations are defined as presentations in public hospital EDs that have a principal diagnosis of mental and behavioural disorders, however this does not include presentations of self-harm, which may have a principal diagnosis relating to the injury.

Because the scope of the collection is limited to emergency departments that meet the nationally agreed criteria above, most of the data provided to the NNAPEDCD relates to emergency department care provided to people living in major cities. Consequently, the collection may not include data for emergency services provided in areas where the proportion of Indigenous people (compared with other Australians) may be higher than average. The quality of the data reported for Indigenous status in emergency departments has not been formally assessed; therefore, caution should be exercised when interpreting these data.

The latest data quality statement for the NNAPEDCD is available at National Non-admitted Patient Emergency Department Care Database 2015–16; Quality Statement.

National Prisoner Health Data Collection (NPHDC)

The National Prisoner Health Data Collection (NPHDC) held by the AIHW includes self-reported information on social determinants of health and health issues from a sample of those entering prison, being released from prison as well as information about clinic visits and services, and medications taken by prisoners. Health information includes self-reported data on diagnoses of mental health disorders, self-harm behaviours, level of psychological distress, substance use and psychiatric treatment service use. Data are collected on prisoners aged 18 years and over. Demographic data include age, sex and Indigenous status. Data are collected over a 2-week period, and sent to the AIHW for collation, analysis and reporting. The collection has been held in 2009, 2010, 2012, 2015 and 2018.

The collection is limited to currently participating jurisdictions (Victoria, Queensland, Western Australia, South Australia, Tasmania, Australian Capital Territory and Northern Territory), and to detainees who consent to contributing to the collection. Therefore, the NPHDC sample is not necessarily representative of the total prison population.

The data quality statement for the National Prisoner Health Data Collection is available at Prisoner Health NBEDS, 2015; Quality Statement.

National Residential Mental Health Care Database (NRMHCD)

The National Residential Mental Health Care Database (NRMHCD) compiled by the AIHW contains data on episodes of residential care provided by government-funded, 24-hour staffed, residential mental health services in Australia. Episodes of residential care are measured in days. An individual can have one or more episodes of care during the reference period. Residential stays for long term residents may span multiple reference periods and be counted as an episode in each relevant collection year, contributing to multiple episodes over sequential collection periods.

States and territories supply this data annually, and the AIHW publishes the data annually in the Mental health services in Australia report.

Data elements in the collection include demographic characteristics of patients and clinical information such as principal diagnosis and mental health legal status.

Indigenous status data should be interpreted with caution due to the varying quality of Indigenous identification.

The latest data quality statement for the NRMHCD is available at Residential mental health care NMDS 2017–18: National Residential Mental Health Care Database, 2019; Quality Statement.

Online Services Report (OSR)

The Online Services Report (OSR) collects survey data from around 270 Indigenous-specific health care organisations funded by the Australian Government under its Indigenous Australians’ Health Programme (IAHP), with data provided to the AIHW. These organisations provide one or more of the following health services to Indigenous people: primary health care; maternal and child health care; social and emotional wellbeing services; and substance-use services.

OSR information collected includes: type of service delivery; gaps faced by the community; clinical care; number of clients and episodes of care and remoteness. Indigenous primary health organisations are asked to select up to five health service gaps faced by the community they serve. This information does not necessarily represent the views of the community. Data are supplied from these organisations annually.

Information on data quality for the OSR collection is available at Aboriginal and Torres Strait Islander-specific primary health care: results from the OSR and nKPI collections.

Specialist Homelessness Services Collection (SHSC)

The Specialist Homelessness Services Collection (SHSC) is administered by the AIHW. The SHSC collects information about clients of specialist homelessness agencies, that is, people who receive assistance from agencies funded by state and territory governments to respond to or prevent homelessness (AIHW 2020b). The SHSC does not include all homeless people and those at risk of homelessness, rather it captures those who seek assistance from an SHS agency receiving funding under the National Affordable Housing Agreement (NAHA) or the National Partnership Agreement on Homelessness (NPAH) to provide specialist homelessness services. Data are collected about clients of specialist homelessness agencies in addition to some information about unassisted people, that is, those who seek services and do not receive services at that time.

Data are collected monthly from agencies participating in the collection. Data are reported in the AIHW's annual Specialist homelessness services reports and the Productivity Commission's annual Report on government services. SHSC information collected includes presence of mental health condition, service type, service length, referrals and demographic information.

The latest data quality statement for the SHSC is available at Specialist Homelessness Services Collection, 2018–19; Quality Statement.

Youth Justice National Minimum Data Set (YJ NMDS)

The Youth Justice National Minimum Data Set (YJ NMDS) (formerly known as the Juvenile Justice National Minimum Dataset) is a joint project between the Australasian Youth Justice Administration and the AIHW, and provides nationally consistent data on young people’s experience of juvenile justice supervision. It contains information on all young people in Australia who were supervised (in the community and in detention) by youth justice agencies. Data are provided annually to the AIHW by state and territory departments responsible for youth justice. Information and includes age, sex, Indigenous status, legal status (unsentenced or sentenced) and state and territories.

The YJ NMDS does not contain information on children and young people in the youth justice system who were not supervised (for example, young people on unsupervised bail), or who were supervised by other agencies, such as police.

The latest data quality statement is available at Youth Justice NMDS 2018–19: Quality Statement.

Australian Bureau of Statistics

Causes of Death collection

The Causes of Death collection is compiled by the ABS. All deaths are registered with the Registrars of Births, Deaths and Marriages in each state and territory and additional information about coroner-certified deaths are maintained by the NCIS. Registration of deaths are provided by state and territory Registrars and the NCIS to the ABS. Information is provided to the ABS on a monthly basis to be compiled into aggregate statistics on an annual basis.

Deaths due to external causes (injuries) such as suicide are usually referred to a coroner for investigation. Coronial cases are more likely to be affected by lag in registration time to be fully investigated. The ABS undertakes a revisions process for those deaths where coronial investigations remained open at the time when initial cause of death was assigned. The revisions process enables the use of additional information either 12 or 24 months after initial processing, allowing the ABS to code a more specific cause of death. Data are deemed preliminary when first published, revised when published the following year, and final when published after a second year. Preliminary data may be subject to change as the coronial processes are finalised.

Data on Aboriginal and Torres Strait Islander suicide deaths are compiled by jurisdiction of usual residence for New South Wales, Queensland, Western Australia, South Australia and the Northern Territory. Data for Victoria, Tasmania and the Australian Capital Territory have been excluded in line with national reporting guidelines.

The count of deaths for Aboriginal and Torres Strait Islander peoples can be influenced by the accuracy of identification of Aboriginal and Torres Strait Islander deaths, late registration of deaths, as a result of coronial inquiry, and changes to death forms and/or processing systems. Due to the small size of the Aboriginal and Torres Strait Islander population, these factors can significantly impact on trends over time and between jurisdictions.

A number of deaths occur each year for which the Indigenous status is not stated on the death registration form. Thus, there may be some degree of under-identification of Indigenous Australians in mortality data.

Further information is available at ABS Causes of Death, Australia methodology.

National Aboriginal and Torres Strait Islander Health Survey (NATSIHS)

The National Torres Strait Islander Health Survey (NATSIHS) is the largest health survey of Aboriginal and Torres Strait Islander people, conducted by the ABS. This survey collects information on a range of topics including long-term health conditions, disability, lifestyle factors, social and emotional wellbeing, cultural identification, language, personal and household characteristics, education and employment and income. It collects information from Aboriginal and Torres Strait Islander people of all ages in non-remote and remote areas of Australia, including discrete Indigenous communities.

The most recent survey was conducted between July 2018 and April 2019 (NATSIHS 2018–19). The sample included just over 10,500 Indigenous people from about 6,500 private dwellings. Information was collected face-to-face by trained ABS interviewers using a computer based questionnaire. In communities, interviewers were accompanied, where possible by local Indigenous advisors.

Survey results are subject to sampling errors as only a small proportion of the population is used to produce estimates that represent the whole population. Non-sampling errors may occur where there is non-response to the survey or questions in the survey, misunderstanding of questions or errors in recording, coding or processing the survey.

Information recorded in this survey is ‘as reported’ by respondents. Responses may be affected by imperfect recall or individual interpretation of survey questions. Any data that are self-reported are also likely to underestimate circumstances about which the respondent is unaware, or may be reluctant to report (for example, certain health conditions, weight, drug use).

Further information is available at National Aboriginal and Torres Strait Islander Health Survey methodology.

National Aboriginal and Torres Strait Islander Social Survey (NATSISS)

The National Aboriginal and Torres Strait Islander Social Survey (NATSISS) conducted by the ABS is a social survey of Aboriginal and Torres Strait Islander Australians which collects data on a range of social and economic topics. Topics include housing, education, cultural attachment, labour force characteristics and crime and justice.

The most recent survey was conducted from September 2014 to June 2015 (NATSISS 2014–15). The sample included about 6,600 responding households. Data were collected from discrete Indigenous communities in non-remote and remote areas and people in private dwellings outside of Indigenous communities.

Information was collected by personal interview from approximately 11,000 Aboriginal and Torres Strait Islander people. The NATSISS sample is specifically designed to select a representative sample of Aboriginal and Torres Strait Islander people. The NATSISS uses the standard Indigenous status question to identify Aboriginal and Torres Strait Islander households from which the sampling process is then undertaken.

Further information is available at National Aboriginal and Torres Strait Islander Social Survey: User Guide, 2014-15.

Other data sources

National Deaths in Custody Program (NDICP)

The National Deaths in Custody Program (NDICP), which is administered by the Australian Institute of Criminology (AIC), monitors the extent and nature of deaths in prison custody, police custody and youth detention in Australia. Data are supplied by state and territory police services and corrections departments and coronial records are drawn from the NCIS database.

Information on cause of death (for example, external trauma), manner of death (for example, self-inflicted) and location of death is collected. Demographic information includes age, sex, Indigenous status, legal status (unsentenced or sentenced) and most serious offence.

The self-inflicted category (manner of death) includes self-harm, whether intentional, unintentional or unknown, and accidental hangings.

Further information is available at National Deaths in Custody Program.

National Disability Insurance Scheme (NDIS) Public Data Collection

The NDIS Public Data Collection includes information on the following areas:

Population demographics
Plans, support types and plan budgets
Market supply
Goals & outcomes
NDIA performance.

The NDIA is responsible for data collection and, in accordance with legislation, policies, guidelines and any specific conditions, for use applicable to that data. As custodians, the NDIA seeks to use NDIS data to advance participant disability support and afford them choice and control.

Further information is available at NDIS Public Data Sharing Policy.

Your Experience of Service (YES) National Best Endeavours Dataset

The Your Experience of Services (YES) Survey is a national survey which collects information from consumers of state and territory public sector specialised mental health services sector, about their experiences of care. Results of the YES survey contribute to the Your Experience of Service National Best Endeavours Data Set (YES NBEDS).

The YES survey is a national initiative funded by the Australian Government Department of Health and managed by the Victorian Department of Health and Human Services in conjunction with the Mental Health Information Strategy Standing Committee (MHISSC). Implementation of the YES survey and national reporting of the data is a key action under the Fifth National Mental Health and Suicide Prevention Plan.

Information collected includes consumer ratings and scores of services. Demographic information includes age, sex and Indigenous status.

Currently, data are available for New South Wales, Victoria and Queensland. In New South Wales, consumers are offered the YES survey during every hospital stay or community episode of care. In Victoria and Queensland, consumers are offered the YES survey over a particular time of the year. Comparisons between jurisdictions should be made with caution.

A positive experience of service refers to mental health consumers who completed the YES survey whose experience of service score is equal to or higher than 80 (out of 100). Specialist drug and alcohol services and services for people with intellectual disabilities are not included in the survey, except where they are specifically established to assist people affected by a mental disorder who also have drug and alcohol related disorders or intellectual disability.

Further information is available at Your Experience of Service National Best Endeavours Dataset: Metadata Online Registry.

The Australian Early Development Census (AEDC)

The Australian Early Development Census (AEDC) is a nationwide data collection of early childhood development at the time children commence their first year of full-time school. Data collection is carried out every three years. The AEDC highlights what is working well and what needs to be improved or developed to support children and their families by providing evidence to support health, education and community policy and planning.

The census involves teachers of children in their first year of full-time school completing a research tool, the Australian version of the Early Development Instrument. The Instrument collects data relating to five key areas of early childhood development referred to as ‘domains’, these include:

physical health and wellbeing
social competence
emotional maturity
language and cognitive skills (school-based)
communication skills and general knowledge.

The AEDC was previously known as the Australian Early Development Index (AEDI) programme. AEDI collections were conducted in 2009 and 2012.

Further information is available at Australian Early Development Census: Metadata Online Registry and Australian Early Development Census website.