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 Why are cancer and screening data important?

Cancer is a leading cause of burden of disease in Australia and has a major impact on individuals, families and the health care system. Cancer and screening data allow a better understanding of how cancer might be prevented, detected or treated, as well as a closer monitoring of outcomes and the effectiveness of policies, by answering the following questions:

  • Incidence: how many Australians are diagnosed with cancer?
  • Mortality: how many Australians die from cancer?
  • Survival: for how long do Australians survive after their cancer diagnosis?
  • Prevalence: how many Australians are living with cancer?
  • Participation: how many Australians are being screened for cancer?
  • Detection: how many cancers are being detected by screening?
  • Trends: are cancers and cancer deaths increasing or decreasing over time?
  • Comparisons: is the impact of cancer the same across remoteness areas, socioeconomic status and other population subgroups?

National cancer data organisations 

The AIHW is part of three major organisations covering three important aspects of national, population-level cancer data:

The AIHW works in collaboration with the Australasian Association of Cancer Registries through the National Cancer Statistics Clearing House to disseminate national cancer data, support research based on these data, and to develop and improve cancer statistics generally.

In addition, the National Centre for Monitoring Cancer was established in 2009 to monitor cancer rates and their impacts and outcomes, as well as to identify and address priority gaps and deficiencies in population-level cancer and related data.

Organisations and data sources for national, population-level cancer and screening data in Australia  

Flowchart showing organisations and data sources for national, population-level cancer and screening data in Australia

Note: Rectangles and dark arrows respectively represent organisations and relationships between them. Circles and light arrows respectively represent national cancer and screening data sources and the flow of data between them.

Sources of national cancer and screening data

The Australian Cancer Database 

The major source of national population-based cancer data is the Australian Cancer Database (ACD), compiled at the AIHW from state and territory cancer registry data. The ACD is a national collection of about 1.9 million cancer cases diagnosed in Australia since 1982. Data in the ACD are used to report on cancer incidence, trends, projections, survival and prevalence, broken down by year of diagnosis, cancer type, sex, age and population subgroup.

The National Mortality Database 

The National Mortality Database (NMD) is used to report cancer mortality statistics and is maintained by the Population Health Unit of the AIHW. Mortality data are provided to the AIHW by state and territory Registrars of Births, Deaths and Marriages and are coded nationally by the Australian Bureau of Statistics. Data in the NMD are used to report on cancer mortality, trends and projections, broken down by year of death, cause of death, sex, age and population subgroup.

National breast screening data 

The AIHW reports on screening indicators including participation, cancer detection, sensitivity, ductal carcinoma in situ detection, recall to assessment and rescreening which are computed from de-identified unit record data or compiled from aggregated data provided by state and territory BreastScreen programs. Participation data are analysed by socio-demographic variables such as age, state and territory, geographic area, socioeconomic status, language spoken at home and Aboriginal and Torres Strait Islander status. 

National cervical screening data 

 The AIHW reports on screening indicators including participation, rescreening, cytology and histology which are compiled from aggregated data provided by state and territory cervical cytology registries. Participation data are analysed by socio-demographic variables such as age, state and territory, geographic area and socioeconomic status.

National bowel screening data 

The AIHW reports on data supplied from the National Bowel Cancer Screening Register maintained by Medicare Australia. As well as data on invitations and faecal occult blood test results which are managed by Medicare Australia, data are also collected from Assessment, Colonoscopy and Histopathology Report forms submitted by primary health care practitioners, colonoscopists, pathologists and other specialists. Data such as participation, screening (faecal occult blood test) outcomes and follow-up of positive test results are analysed by socio-demographic variables such as age, sex, state and territory, geographic area and socioeconomic status. 

Other data collections 

Other AIHW data collections used to report on various aspects of cancer include the National Hospital Morbidity Database, the Disease Expenditure Database and population data.

Outside the AIHW, other cancer data collections, while not population-based, record more detailed clinical, staging and treatment data. There is also a growing number of bio-specimen databases in Australia.