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In Australia, cancer is a notifiable disease (with the exception of non-melanoma skin cancers). This means it is a legal requirement in all Australian states and territories for all new cases of cancer (excluding non-melanoma skin cancers) to be reported and recorded (registered). Information on newly diagnosed cancers is collected as an individual moves through cancer detection, diagnosis and treatment. Each state and territory cancer registry receives information from a variety of sources, including hospitals, pathology laboratories, radiotherapy centres and registries of births, deaths and marriages.

Improvements in cancer control cannot be made without the latest clinical data and statistics. The AIHW, through the National Centre for Monitoring Cancer (NCMC) makes available a broad range of cancer statistics and publications to assist the Australian government and others in determining the burden associated with cancer among the Australian population.

The information collected and analysed by the NCMC, is used to:

  • monitor the number of new cases and deaths from cancer in Australia each year and publish regular reports
  • publish occasional reports on particular cancers or population groups
  • assist in planning cancer prevention measures such as screening programs or improving services to care for cancer patients
  • inform policy decisions about cancer and the impact of any new policies or changes to policy.

What about privacy?

Cancer registries hold identifying information about individuals diagnosed with cancer, including name, address and date of birth. These data are important to ensure that complete information about each incident case of cancer can be collected. This information is provided to the AIHW as part of the ACD.

There are a number of physical, computer, legislative and data governance arrangements in place within the AIHW to ensure privacy in relation to the ACD. These systems ensure that:

  • only authorised people have access to the AIHW building
  • access to a de-identified version of the ACD is limited to AIHW employees who have been provided with authorised system accounts and passwords because they need access to these data
  • restricted access to those identifying data items (name, address and date of birth) is granted to only a small number of authorised AIHW staff who require this information for data linking purposes
  • in the exceptional circumstances where identifying data are used in research this only occurs if the research and use of identifying data has been approved by the appropriate health research ethics committee/s and data custodian/s
  • all AIHW employees are regulated by the confidentiality provisions of the AIHW Act (1987), Privacy Act (1988) and liable to the penal provisions of the Crimes Act (Commonwealth) for breaches of confidentiality.

Source: adapted from the NCSCH 2013 protocol.

Cancer data collections

Australian Cancer Database

The primary source of national cancer incidence data is the Australian Cancer Database (ACD) which contains records of all primary, malignant cancers (except basal cell and squamous cell carcinomas of the skin) diagnosed in Australia since 1982. The ACD is held by the NCSCH and is the principal dataset used in reporting by the NCMC.

The Australian Cancer Incidence and Mortality (ACIM) books are Excel workbooks which provide summary statistics and raw data for major cancers for incidence from 1982 and mortality from 1968.

Data quality statement: Australian Cancer Database

National Mortality Database

The primary source of national cancer mortality data is the National Mortality Database (NMD). The NMD is held by the AIHW and is the principal dataset used in reporting cancer as a cause of death.

The General Record of Incidence of Mortality (GRIM) books are Excel workbooks containing mortality data on selected causes of death by age and sex for each year.

National Death Index

The National Death Index (NDI) is held by the AIHW and is the principal dataset used for mortality data linkage (data integration) to produce cancer prevalence and survival data.

Cancer screening data

Data for the three national population screening programs (the National Bowel Cancer Screening Program, BreastScreen Australia, and the National Cervical Screening Program) are held by the AIHW. These datasets are the principal source of data on population screening for cancer in Australia.

Data quality statement: National Bowel Cancer Screening Program screening data

Data quality statement: BreastScreen Australia data

Data quality statement: Cervical screening data

National Hospital Morbidity Database

The National hospital morbidity database (NHMD) is a collection of summary records for episodes of care (separations) in Australian public and private hospitals. It is the primary source of information on cancer hospitalisations and treatment.

The National hospital morbidity data cubes contain information on the principal diagnoses, procedures and diagnosis related groups of patients admitted to Australian hospitals, sourced from the NHMD.

Medicare Benefits Schedule

The Medicare Benefits Schedule is a payment data system that records medical services, tests and procedures funded under the Medicare Benefits Scheme for which a claim for payment is made. This is the main data source for information on those cancer-related detection and diagnostic tests, treatments and other services funded under the Scheme. It does not contain diagnosis or other outcome information from diagnostic tests. More information, and access to these data, is available from the Department of Human Services: Medicare Item Reports.

Other cancer data sources

  • Pivot table (3.2MB XLSX) Excel pivot table that contains information about all cancers rather than just the major ones but not in as much detail as in the ACIM books. Due to the number of rows required for the raw data, this pivot table is only available in Excel 2010 (.xlsx).
  • AIHW cancer and screening publications

Requesting further data

The AIHW is able to make available a broad range of cancer statistics on a cost-recovery basis. For information on requesting these data, see requesting additional cancer and screening data.