Learning Outcomes

Upon completing this chapter, you will be able to:

• Understand the sources of health information and data available beyond the health care record.
• Reflect on how the data sources can be used to inform decision making.

Introduction

The purpose of this chapter is to provide you with an understanding of the many data sources available in health aside from the healthcare record covered in the chapter Data The Heart of the Healthcare System. In particular, this chapter describes the sources of health information, including the various data repositories held in hospitals, specialised health units and government agencies. A global context is provided for many of the sources, including examples, particularly in the Australian context. Data sources include population data such as the census and vital and civil registration statistics, disease surveillance systems, and surveys.

Understanding health data sources beyond the health care record discussed in the previous chapter is important for a number of reasons:

• Utilising data from multiple sources such as government agencies and specialised health units can provide a broader perspective and a more rounded picture of the health of a community or country.
• Data from these diverse data repositories such as population data, disease surveillance systems, and surveys offer insights not available in the healthcare record alone.
• Improved health outcomes can be achieved through the analysis of the data sources by identifying trends, tracking outbreaks, and planning public health interventions.

Population data

Census

A census is an essential tool that helps countries answer questions such as:

• How many people are there in a defined population?
• Who are the people in the defined population?
• Where do the people in the defined population live?

In essence, a census provides an opportunity to “count the nation” and gather a profile of the population based on characteristics such as age, gender, education, occupation, income, housing, access to water, and other facilities. For many nations, the census is the only chance to collect this crucial base data, which forms the foundation for evidence-based decision-making at various levels.

The United Nations (2017) produced an important reference manual Principles and Recommendations for Population and Housing Censuses, Revision 3 [PDF]. The manual is used for the planning and conducting of a census by national statistical offices and country census official. See the link to the Manual by the United Nations to review the manual in detail:  Note that this is a large document and may require good bandwidth to access.

Traditionally, a census focuses on the population. The United Nations (2017) identified two types of censuses: a population census and a housing census:

• A population census involves the complete process of collecting, compiling, evaluating, analysing, and disseminating demographic, economic, and social data at a specific time for all individuals in a country or a well-defined part of it.
• A housing census involves the complete process of collecting, compiling, evaluating, analysing, and disseminating statistical data at a specific time for all living quarters and their occupants in a country, or a well-defined part of it.

In most countries, these activities are combined into a Census of Population and Housing. For many countries, the census is the largest peacetime activity, requiring mapping of the entire country, mobilising a large team of enumerators, conducting public awareness campaigns, gathering data from individuals and households, and compiling, analysing, and disseminating the data.

Uses of Census Data

As the census provides a snapshot of a nation at a specific time, it allows decision makers to plan for essential public services like schools, healthcare and roads. It helps in understanding the population’s size, location, and needs regarding these services. By aiming to include everyone and asking uniform questions, the census offers a detailed view of the population, enabling comparisons, even within small areas like suburbs or postal regions. In the context of how hospitals can use census data, some examples include:

• Resource Allocation: Hospitals can use census data to determine the demand for various medical services and allocate resources accordingly. Understanding the demographic distribution of the catchment will aid with planning of services. Areas with a higher population of elderly individuals may require more geriatric care services. Likewise knowing the multicultural diversity of your population can assist in providing appropriate services. For those establishing new hospitals, understanding the Aboriginal and Torres Strait Islander percentage of the catchment population can assist with preparation and licensing requirements.
• Infrastructure Planning: Data on housing and population density can help hospitals plan for expansions or new facilities in areas of need.
• Emergency Preparedness: Understanding the demographic and socio-economic characteristics of a region can aid in developing targeted emergency response plans and health campaigns.
• Public Health Initiatives: Census data can be used to identify health trends and disparities within different communities, allowing hospitals to tailor public health initiatives and outreach programs effectively. It also allows the hospital to ensure they have the right public health information in the right languages and contexts for diverse populations.

Other examples of census data use that may overlap with the health sector include:

• Population: Grant allocation and planning for services.
• Health: Allocation of health and social services based on data on the age and socio-economic make-up of the population.
• Housing: Measures of inadequate accommodation and the need for new housing.
• Employment: Planning of jobs and training policies.
• Transport: Information collected on travel to and from work and the availability of cars contributes to the understanding of pressures on transport systems and the planning of roads and public transport.
• Ethnicity: Identify the extent and nature of the ethnic groups. Measure the success of equal opportunities policies and plan programs to take account of minority groups.
• Statistics and Research Benchmarks for statistical compilation or frames for sample surveys, benchmark for research and analysis. Availability of small area data allows for comparison of data at small area level, not just state, district or provincial level.

What is Collected in a Census?

A census is a unique chance to reach every household and collect essential data about the country. It is crucial that census content accurately reflects the nation’s information needs. This means understanding the key questions the country wants to answer and identifying the relevant topics. The United Nations (2017) suggests that these topics should be chosen after considering:

• The needs of various data users in the country.
• Achieving a high level of international comparability, both regionally and globally.
• The public’s willingness and ability to provide accurate information on these topics.
• The total national resources available for conducting the census.

When deciding on the topics to include, countries should consider whether there are alternative methods for gathering the data. For example, health-related questions might be better suited for a health survey. However, the census might be the only opportunity to gather statistics on mortality and morbidity. In some countries, especially developing ones, you might find questions about infant deaths in the household over the past year, as well as environmental factors like access to water and food.

Country Census Practices and Examples

The principles identified above provide recommendations for how a country should conduct a census, with a key recommendation of the United Nations (2017) being that a Census of Population and Housing should be conducted every 10 years, a recommendation followed by many countries such as the England, Wales, Scotland, the United States of American and India. Australia, Canada, Ireland, Japan, and New Zealand conduct their census every five years. A summary is provided below on the Australian census, and links and summaries of how other countries conduct their census are provided. Links to data are also provided. It is also important to note that the national statistics agencies of many countries share ideas, learnings, and innovations in conducting a census so that countries can provide the best experience and quality data for decision making.

Australia

As Australia’s national statistical agency, the Australian Bureau of Statistics (ABS) conduct a five yearly Census of Population and Housing. The most recent census was conducted in August 2021 (ABS, n.d.). The deployment of the census in Australia is governed by the Census and Statistic Act 1905 (Cth, n.d.). The Act designates mandatory completion of the census form for all people and gives provision to direct people to provide the information (Cth, n.d.).

The scope of census includes everyone in Australia on census night, except for foreign diplomats and their families. Visitors to Australia are counted regardless of their duration of stay (ABS, 2022a). Australian residents who are abroad on census night are not included (ABS, 2022a). After the census, the ABS uses emigration and immigration data to adjust the population figures, considering residents, citizens, and non-citizens. The data collected in the Australian Census of Population and Housing includes age, sex, address, marital status, religion, country of birth, indigenous status, ethnicity/ancestry, language spoken at home, educational background, occupation, income, household information, disability/carer status, children, fertility, and motor vehicles.

The ABS primarily conduct an online census, with 80% of people responding to the census via the online form, an increase from the 63% who completed the census online in 2016(ABS, 2022b). An increase in the response rate from 95.1% in 2016 to 96.1% of the population in 2021 completing the census was also noted (ABS, 2022b).

For the 2021 census, the ABS (2022c) had inclusivity strategies in place to ensure barriers for participation in the census were addressed. This included strategies for First Nations people, culturally and linguistically diverse populations, and homelessness.

The following table provides a listing of various countries, their frequency of census, links to how they conduct a census, and access to data from their most recent census.

Note: Each link opens in a new tab.

Table 1. Global census and data availability for various countries.  

Country	Frequency	How Census is Conducted	Data availability
Australia	5 years
Canada	5 years
England and Wales	10 years
Fiji	10 years
India	10 years
Ireland	5 years
Japan	5 years
New Zealand	5 years
Papa New Guinea	10 years
Scotland	10 years
United States of America	10 years

Civil Registration

Civil registration, also known as vital registration, involves the documentation of key life events such as births, deaths, and marriages within a country (United Nations, 2023). This process should be continuous and permanent, ideally supported by laws that mandate registration (United Nations, 2023).

The advantages of a civil registration system include:

• Protecting rights related to social status and benefits.
• Establishing identity, parental relationships, and citizenship.
• Providing eligibility for social benefits and age-related items like school entry, the right to work, and driver’s licenses (United Nations, 2023).

A comprehensive civil registration system ensures these rights for the entire population. It also offers administrative benefits by monitoring causes of death and identifying individual needs, such as maternal and child healthcare. Additionally, it meets the need for data on small geographic areas. The statistical data from a complete civil registration system are free from sampling errors and can be cross-checked with other records, such as census data. These records serve as a foundation for more detailed studies. In some countries, the civil registration system is a primary source of health statistics.

Uses of Civil Registration Data

Civil registration data has uses for both the individual and from a research and policy perspective. In the context of the individual, it provides evidence of a person’s birth, the facts related to the birth (such as date and location of birth) and provides evidence of the death. In the context of research and policy the administrative by product data can be applied:

• In public health programs in postnatal care of the mother and child or to identify populations at risk.
• For administering social services and social programs.
• In public health programs to control infectious diseases, programs for public safety, accident prevention, and crime eradication.
• In health research of maternal, infant, or fetal death, and preparing health indicators such as infant mortality rate, perinatal/neonatal mortality rates, and maternal mortality rates.
• For studies of mortality differentials by age, sex, and geographical location.
• In historical demography research involving long term trends.
• In the construction of life tables and population estimates.
• In public health programs in the absence of morbidity data or for health education.
• In maternal and child health services for planning an evaluation.

Confidentiality safeguards are essential for both the legal and administrative use of vital records, as well as for the statistical use of the data they provide. Protecting confidentiality helps maintain individual privacy, improves the completeness and accuracy of registration data, and strengthens research based on these data.

A country’s robust civil registration system is built on a well-designed registration law that provides clear instructions on how the system should operate. While the law governing civil registration typically does not appear in the country’s basic constitution, it must align with the principles and rights protected by that constitution. Unlike the vital statistics system, which is often included under a general statistics law, the civil registration system requires a specific law to ensure its continuity, permanence, and mandatory nature.

Example of Country Civil Registration

In Australia, the responsibility for registering births, deaths (including fetal deaths and causes of death), and marriages lies with the individual state and territory governments (ABS, 2018a), (ABS, 2018b). Each state and territory have legislation governing the registration of these vital events and the establishment of agencies to manage this information (ABS, 2018a), (ABS, 2018b). The legislation also outlines the roles and responsibilities of the Registrars of Births, Deaths, and Marriages (RBDM).

The primary purpose of registering vital events is administrative, ensuring a person’s legal status in life (through birth registration) or in death (through death registration, including the cause). For each birth, a birth registration statement must be completed and signed by at least one parent of the child (ABS, 2018a). Once registered, the family can apply for a birth certificate.

Several forms are required to register a death, and different individuals are responsible for providing the necessary information (ABS, 2018b). All forms must be completed before the RBDM finalises the registration. These forms include death notification form (completed by the funeral director) and medical certificate of cause of death (completed by a doctor who attended the patient before death and forwarded to the RBDM). In cases of suspicious or unnatural deaths, a coroner completes the medical certificate of cause of death after investigations (an interim certificate may be issued for complex cases), and certificate of burial or cremation (completed by the funeral director and submitted to the RBDM).

To process administrative data into useful statistical data, data on births and deaths is provided monthly to the ABS in electronic format ABS, 2018a), (ABS, 2018b). The processing involves system edits, data cleaning, and aggregate data quality checks. The processing of cause of death data is more complex, as evidenced by the diagram:

Data are made available annually via the ABS website on each of the above collections. For those interested, data can be accessed via the following links.

Note: Each link opens in a new tab.

• Cause of death
• Deaths
• Births

In recognition of the need for more timely data needing to be available during the COVID-19 pandemic, the ABS introduced the publication of Provisional Mortality Statistics [opens in new tab] in June 2020, which provided an early indication of patterns of mortality (ABS, 2024) and they have continued to provide this data post-pandemic.

Disease Surveillance Systems

Disease surveillance systems enable the collection and analysis of data on specific diseases. These systems include registries for conditions such as cancer, AIDS, or injuries and trauma and in public health emergencies such as COVID 19 (World Health Organization, 2025a). Typically operated by government agencies, the data collection is usually mandated by law.

National Notifiable Disease Surveillance Systems (Australia)

The National Notifiable Diseases Surveillance System (NNDSS) oversees the monitoring of over 50 communicable diseases or disease groups, such as H1N1, HIV/AIDS, foodborne diseases like Hepatitis A, meningococcal and gonococcal diseases, vaccine-preventable diseases and childhood immunization coverage (e.g., mumps, whooping cough), rare paediatric communicable diseases, rotavirus, tuberculosis, and influenza (Department of Health, Disability and Ageing, 2025a). As new communicable diseases are identified, they are added to the collection system. For example, COVID-19 was included in the list of quarantinable diseases from 2020.

Notifications under this scheme are made through state or territory health authorities, in accordance with health legislation in each jurisdiction. Electronic files are provided to the Department of Health, Disability and Ageing’s NNDSS [opens in new tab] where de-identified files are collated, analysed, and updated data is published.

Data can be utilised to identify high-risk areas, design educational programs, and allocate resources to mitigate or eradicate disease outbreaks. This information is shared with public health officials, healthcare providers, researchers, and other key stakeholders, as well as the public, when appropriate.

Disease Registries

A registry is a specialised form of disease surveillance designed to gather data on various health issues, such as cancer. It functions as a facility that collects, analyses, and reports data, serving as a mechanism for disease monitoring (Department of Health, n.d.). The data collection for registries is typically supported by legislation that enforces the provision of information.

There are three main types of registries:

Population-based registries focus on assessing the impact of a disease within a specific community or geographically defined population (Department of Health, n.d.). They collect data to monitor disease trends, current incidence, morbidity, and/or mortality. An example would be any of the cancer registries in each of the states and territories in Australia.

Hospital-based registries collect data about patients attending a particular hospital (Department of Health, n.d.). They provide information that can be used by hospital administration and medical staff to evaluate the effectiveness of diagnosis and treatment. These registries are established to assess disease processes, treatment, and survival relationships, facilitate patient follow-up, assess prognostic indicators, gain statistical evidence related to disease epidemiology, and support retrospective and prospective clinical research.

Special purpose registries reflect local interest in specific diseases, such as tuberculosis or AIDS (Department of Health, n.d.). Due to their ad hoc nature, they are usually shorter-lived than hospital-based or population-based registries.

Service and Resource Records

Service Records

Service records are crucial for providing health planners with information about the number and types of services delivered to clients within the health system. An integrated approach to collecting these records is essential to minimise the burden on those providing the data. The principle of “collect once, use many times” should be applied to service records (Health Metrics Network & World Health Organization, ‎2008). Consequently, much of the source data for service records is collected for other purposes, and the information is compiled as a by-product, often referred to as administrative by-product data. Examples of service records in the Australian context are hospital morbidity data, the Medicare Benefits Scheme, and Pharmaceutical Benefits Scheme.

Other Australian context examples of hospital morbidity data include the Private Hospital Data Bureau and Hospital Casemix Protocol data collections, which involve the submission of de-identified patient information from private hospitals for policy development and funding calculations in Australia.

• Private Hospital Data Bureau data collection: Private hospitals submit data on admitted treatment episodes, including patient demographics, clinical information, and hospital charges. These data have been collected since 1997 and are used to inform the Medical Costs Finder app and calculate the national efficient price for hospital services (Department of Health, Disability and Ageing, 2022a).
• Hospital Casemix Protocol data collection: Under the Private Health Insurance Act 2007 (Cth, n.d.), both public and private hospitals submit HCP data for privately insured patients, covering clinical, demographic, and financial information. These data, collected since 1995, are also utilised for policy development and research purposes (Department of Health, Disability and Ageing, 2025b).

Resource Records

Resource records are divided into three categories: 1. infrastructure and health services, 2. human resources, and 3. financing and expenditure (Health Metrics Network & World Health Organization, ‎2008). These categories contain essential data sources that support the continuous planning and maintenance of health information, health systems, and health resources.

Infrastructure records

From an infrastructure and health service perspective, it is important to continuously monitor the number and types of operational health care facilities at national, state, district, provincial, and local levels (Health Metrics Network & World Health Organization, ‎2008). For example, each jurisdiction in Australia has legislative requirements for licensing a facility with the State Health Authority before it can be established (Department of Health, Disability and Ageing, 2022b). This is particularly important, as it ensures ongoing compliance with health and safety regulations and reporting requirements.

Human resource records

Measuring human resources is essential for determining whether a health system has enough resources to meet both current and future needs. While a national database of human resources is ideal, it is not a feasible option in many countries and other data sources should be considered if such a database is unavailable (Health Metrics Network & World Health Organization, 2008). In the Australian context, the Australian Institute of Health and Welfare (AIHW) uses various data sources to gather information on the national health labour workforce and make this information available via the  AIHW website [opens in new tab].

Finance and expenditure

In order to evaluate the efficiency and effectiveness of a healthcare system, it is important to understand the sources of health care funding, how those resources are allocated, and how they are utilised. It is essential to have an awareness, not only of the expenditure, but also other factors that may influence how the funding is spent, including societal, political, and economic factors. In the Australian context, the AIHW compile statistics on health and welfare expenditure [opens in new tab] and make them available via their website.

A key organisation that plays a role in ensuring the consistency of the financial data that is collected in Australia is the Independent Health and Aged Care Pricing Authority (IHACPA). IHACPA are an independent government authority who help the Australian Government to allocate funds for hospital and aged care services more efficiently by offering evidence-based price determinations and pricing advice (IHACPA, 2025). IHACPA play a key role in providing the classification systems and underpinning guidelines that enable the financial data to be collected and ensuring financial consistency. To read further on classifications and casemix refer to the chapter on Healthcare Classifications and Terminologies.

Hospital data repositories (and the Health Information Manager role)

Much of the data mentioned in the service and resource records above originates in the individual hospitals and health services. Each of these services has a responsibility for collecting and managing the data before ensuring the data are transferred across to the relevant state and federal government authorities in the Australian context. The data may be located in a hospital wide data repository or located in a number of different data repositories in the hospital.

It is the responsibility of the health information managers in those facilities, as the data custodians, to identify all information assets within their organisation and to ensure the data is safe, secure, and accessible when required – but only to those who should have access. That is, the health information manager needs to ensure data management practices and policies are in place that incorporate concepts such as data cleansing, data quality, data maintenance, database administration, data warehousing, meta-data management, and data security. Health information managers are also responsible for ensuring the data within their hospital repositories are collected in alignment with state and national guidelines, as outlined in national minimum data sets and data dictionaries. In the Australian context, national minimum data sets and data dictionaries are available in the metadata repository Metadata Online Registry (METEOR) [opens in new tab]).

Consistent application of good data management practices allows for comparisons within a facility as well as across facilities, states, and also internationally. This allows for confidence in the data collection, and consequently, the data. This ensures that researchers, statisticians, and policy and planning people can use the data with confidence. Through their understanding of the collected data, health information managers are best placed to provide advice to data users on the best application of the data and how the data can be used to inform decision making.

Population Surveys

A survey systematically gathers information through various methods such as face-to-face interviews, self-completed questionnaires, telephone, postal service, or a combination of these approaches (ABS, 2023a). The representativeness of the surveyed population determines the generalisability of the results. Surveys can provide insights into the health status of a population, their use of health services, and health-related lifestyle aspects.

The objectives of a health survey include obtaining national benchmark information on various health issues, monitoring health trends over time, and providing data on health indicators for national health priority areas and significant subgroups of the population (ABS, 2023b) (ICF International, 2012). Health surveys may collect data on health status indicators, injuries, health-related actions, and health risk factors such as smoking, alcohol consumption, diet, exercise, body mass, sun protection, breastfeeding, and immunisation rates. Examples of specific data collected include women’s health items such as breast and cervical cancer screening practices, contraceptive behaviours, hormone replacement therapy, breastfeeding history, and demographic and socio-economic characteristics.

Examples of International Health Surveys

Demographic and Health Survey (DHS)

The DHS offers a detailed summary of population health, focusing specifically on child, maternal, and sexual health. Countries that have previously participated in these surveys are typically those that have received support from aid organizations like USAID, the World Bank, and UNICEF (Croft et al., 2023). The survey targets a sample population and is usually conducted in countries lacking adequate information from administrative or other routine data collections. Historically, the questionnaire is divided into three sections (Croft et al., 2023):

1. A household questionnaire that gathers demographic information such as age and gender of all household members, as well as environmental factors like access to clean water
2. A women’s questionnaire for all women aged 15 to 49 in the household, covering topics like reproductive behaviour, contraceptive knowledge and use, and issues related to children and women
3. A men’s questionnaire for all men aged 15 to 59 in the household, focusing on contraceptive knowledge and behaviours.

A biomarker questionnaire and a fieldworker questionnaire have been introduced in more recent iterations (Croft et al., 2023).

World Health Organization (WHO) – World Health Survey and World Health Survey Plus (WHS+)

The World Health Organization (WHO) has created and implemented a survey program called the World Health Survey (WHS). This program gathers comprehensive baseline data on population health, the outcomes of health system investments, and the current functioning of health systems. It also monitors inputs, functions, and outcomes.

WHO (2025b) recognised the importance of countries having effective data systems that integrate various sources such as household surveys, surveillance systems, health facility assessments, administrative data, civil registration, and vital statistics. These systems are crucial for monitoring progress towards Sustainable Development Goals (SDGs) (WHO, 2025b). To support this, WHO (2025b) developed WHS+, which helps countries systematically collect, analyse, and interpret health-related data essential for public health planning, implementation, and evaluation. WHS+ is adaptable to country-specific needs due to its design features, addressing various public health topics, using innovative technology, and having a flexible methodology. It can be integrated into ongoing surveys or conducted as a standalone survey.

Australian examples

The ABS run the National Health Survey, which involves key stakeholder consultation, including agencies like AIHW and the Department of Health, to gather essential information. The survey aims to collect national data on Australians’ health status, their use of health services and facilities, and health-related lifestyle aspects (ABS, 2022d). The data, which cover both urban and rural areas across all states and includes residents of private and non-private dwellings, can be used to monitor health trends over time (ABS, 2022d).

The survey provides information on long-term conditions, risk factors, and health-related conditions. It also includes details on self-management of conditions, such as consultations with health professionals about healthy lifestyles, GP check-ups, and tests for cholesterol, blood pressure, and bone density (ABS, 2022d). Additionally, it covers occupational exercise, sitting time, and physical measurements of individuals aged five years and over, including height, weight, and waist and hip circumference (ABS, 2022d). If you are interested you can access data from the National Health Survey [opens in new tab].

The AIHW (2025) also run population surveys on areas of interest in the health sector. For example, the National Drug Strategy Survey is conducted every three years and respondents are about their use and opinions of licit and illicit drugs, including alcohol, tobacco, cannabis, e-cigarettes and vapes (AIHW, 2025). The survey acknowledges that drug use effects not just the individual, but families, and communities (AIHW, 2025). You can access the Australian Institute of Health and Welfare’s [opens in new tab] publications on this topic. The AIHW also analyse data collected via survey by other organisations (such as the ABS) to produce publications and articles on health areas of interest such as disability, chronic conditions, veterans and young people.

Summary

This chapter was developed to provide you with an understanding of the data available beyond the health care record. Data sources identified in this chapter will assist you as a health information management professional in informing your decision making for policy and planning of your health service or your state, province or district. Many additional sources are available to you in both the Australian and international contexts. The purpose of this chapter was to identify some of those sources so that you can then further explore other sources and consider how you can use them for informed decision making for the questions that need to be answered to provide better health and better outcomes for the health sector. To help that exploration at the national and international level, a summary table is provided below to key Australian and International agencies who provide data for informed decision making.

It is suggested that you explore the data in the links provided in this chapter and the table below as a first step. Exploring the data and attempting the activities will broaden your understanding of how you can use these data. You should also identify the people in the organisations discussed in this chapter who can assist you in understanding how you can use the data for informed decision making. This includes the health information managers in the organisations and those responsible for the data as data custodians or who have collected the data. They are the people who understand the data best and know how best it should be applied for to assist you in answering your questions – for better health and better health outcomes.

References

Australian Bureau of Statistics. (n.d.). The Australian Census. https://www.abs.gov.au/census/about-census/australian-census

Australian Bureau of Statistics.  (2018a). Births. https://www.abs.gov.au/AUSSTATS/abs@.nsf/DSSbyCollectionid/C25FB9875049D14ACA256BD000281108?opendocument

Australian Bureau of Statistics.  (2018b). Causes of Death. https://www.abs.gov.au/AUSSTATS/abs@.nsf/DOSSbyTopic/4FC2E45FA041C764CA256BD000284A93?OpenDocument

Australian Bureau of Statistics. (2022a). Census methodology: Information on data quality, processing and collection. https://www.abs.gov.au/census/guide-census-data/census-methodology/latest-release

Australian Bureau of Statistics. (2022b). Story 14: The 2021 Census data: Delivering the 2021 Census. https://www.abs.gov.au/census/about-census/delivering-2021-census/story-14-2021-census-data

Australian Bureau of Statistics. (2022c). Story 3: An inclusive Census: Delivering the 2021 Census. https://www.abs.gov.au/census/about-census/delivering-2021-census/story-3-inclusive-census

Australian Bureau of Statistics. (2022d). National Health Survey: Information on health behaviours, conditions prevalence, and risk factors in Australia. https://www.abs.gov.au/statistics/health/health-conditions-and-risks/national-health-survey/2022.

Australian Bureau of Statistics. (2023a). Basic Survey Design. https://www.abs.gov.au/websitedbs/D3310114.nsf/home/Basic+Survey+Design+-+Introduction#:~:text=Surveys%20are%20used%20to%20collect,a%20subset%20of%20the%20population.

Australian Bureau of Statistics. (2023b). National Health Survey. https://www.abs.gov.au/methodologies/national-health-survey-methodology/2022

Australian Bureau of Statistics. (2024). Provisional Mortality Statistics Methodology. https://www.abs.gov.au/methodologies/provisional-mortality-statistics-methodology/jan-sep-2024

Australian Institute of Health and Welfare. (2025). National Drug Strategy Household Survey 2022–2023. https://www.aihw.gov.au/reports/illicit-use-of-drugs/national-drug-strategy-household-survey/contents/about

Census and Statistics Act 1905. (Cth, n.d.). https://www.austlii.edu.au/cgi-bin/viewdb/au/legis/cth/consol_act/casa1905241/

Croft, T. N., Allen, C. K., Zachary, B. W., et al. (2023). Guide to DHS Statistics. Rockville, Maryland, USA: ICF. https://www.dhsprogram.com/pubs/pdf/DHSG1/Guide_to_DHS_Statistics_DHS-8.pdf

Department of Health. (n.d.). Chronic disease teaching tools: disease registries. https://www.health.ny.gov/diseases/chronic/diseaser.htm

Department of Health, Disability and Ageing. (2022a). Private Hospital Data Bureau data. https://www.health.gov.au/topics/hospital-care/our-role/phdb-data

Department of Health, Disability and Ageing. (2022b). About hospital care in Australia. https://www.health.gov.au/topics/hospital-care/about

Department of Health, Disability and Ageing. (2025a). National Notifiable Disease Surveillance System (NNDS). https://www.health.gov.au/our-work/nndss

Department of Health, Disability and Ageing. (2025b). Hospital Casemix Protocol data https://www.health.gov.au/topics/hospital-care/our-role/hcp-data

Health Metrics Network & World Health Organization. (‎2008)‎. Framework and standards for country health information systems, 2nd ed.  https://iris.who.int/handle/10665/43872

Independent Health and Aged Care Pricing Authority. (2025). Who are we? https://www.ihacpa.gov.au/about-ihacpa/who-we-are

International Coaching Federation (ICF) International. (2012). Survey Organization Manual for Demographic and Health Surveys. MEASURE DHS. Calverton. Maryland: ICF International.

Private Health Insurance Act 2007 (Cth n.d.). https://www.legislation.gov.au/C2007A00031/2019-12-13/text

United Nations. (2017). Principles and Recommendations for Population and Housing Censuses, Revision 3. https://unstats.un.org/unsd/publication/seriesM/Series_M67Rev3en.pdf

United Nations. (2023). Guidelines on the Legislative Framework for Civil Registration, Vital Statistics and Identity Management https://unstats.un.org/unsd/demographic-social/Standards-and-Methods/files/Handbooks/crvs/CRVS_GOLF_Final-E.pdf

World Health Organization. (2025a). Surveillance in emergencies. https://www.who.int/westernpacific/emergencies/surveillance#:~:text=Public%20health%20surveillance%20is%20the,could%20become%20public%20health%20emergencies.

World Health Organization. (2025b). World Health Survey Plus. https://www.who.int/data/data-collection-tools/world-health-survey-plus

Image descriptions

Figure 1: The flow chart begins with a death event. A death event has two options, a funeral director or reportable cause of death. Funeral director registers the death with the registrar of births deaths and marriages. A reportable death has two options, yes or no. No, a Not reportable death, will be certified by a doctor then registered with the registrar of births deaths and marriages. Yes, a reportable death, goes to a coroner investigation. Coroner investigation contains three fields, police investigation, autopsy, and other (e.g. toxicology). Coroner investigation goes to certification by coroner. There are two options from certification by coroner, registrar of births deaths and marriages and National Coronial Information System. The next section of the flow chart is called ABS processing. The flow chart continues from registrar of births deaths and marriages and National Coronial Information System to Australian Bureau of Statistics amalgamation and record checks. This flows to cause of death coding and validation process. This then flows to validation and finalisation of deaths file. The flow chart ends at the next section called statistics available to users at the statistical outputs option.

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