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Cancer data for cancer diagnosis and excess deaths

Details about cancers diagnosed in Australia and their survival outcomes were obtained from the Australian Cancer Database, which is maintained by the Australian Institute of Health and Welfare (AIHW). The Cancer Data and Monitoring Unit at AIHW combines the information collected by each of the eight State and Territory Cancer Registries in Australia into the Australian Cancer Database.

The Australian Cancer Database includes all primary invasive cancer cases (excluding basal and squamous cell carcinoma of the skin) notified to each of the cancer registries across Australia. These notifications come from hospitals and pathology laboratories in all states and territories, as well as general practitioners, cancer screening registers and nursing homes in some, but not all, states and territories. It is a legal requirement for cancer to be notified to the appropriate Registry across Australia, hence cancer is one of the few diseases with almost complete coverage in Australia. The dataset that each of the cancer registries provide to the AIHW includes details about the SA2 of usual residence when the cancer was diagnosed.

Cancer registries use address information of usual residence at the time of diagnosis to determine the SA2 information. The method by which each cancer registry allocates this varies. Cancer Registries in New South Wales, Australian Capital Territory, Tasmania, Victoria and Western Australia apply geocoding methods to the full street address. In Queensland and South Australia, the combination of suburb and postcode were used to map to SA2 areas, either through geocoding or using a concordance file. In Northern Territory, suburb name is used in the urban areas (Darwin and Alice Springs) while a range of location information is used for areas in rural and remote areas. Additional manual checks and verification are conducted on an ongoing basis by Registry staff to increase the completeness and accuracy of the processes.

Cancer registries routinely link with the National Death Index to determine whether people who have been diagnosed with cancer have died. For people who were identified as having died, this linkage provides details about the time between diagnosis and death.

Approval to obtain the required information was first obtained from Human Research Ethics Committees and the respective Data Custodians in each state and territory.

Once all the approvals were obtained, the AIHW provided the required data in de-identified format. De-identified means that the data included no identifying information about individuals, such as names, street address or date of birth.

Human research ethics committee and data custodian approvals

State Cancer registry Human Research Ethics Committee Approval Data Custodian Approval
Australian Capital Territory Australian Capital Territory Cancer Registry ACT Health Human Research Ethics Committee (EC00100)
Ref: ETHLR.16.235
ACT Cancer Registry (Ref 2017-724)
New South Wales New South Wales Cancer Registry NSW Population & Health Services Research Ethics Committee (EC00410)
Ref: 2017/HREC0203 (New Ref: 2019/ETH01656)
Cancer Institute New South Wales
Northern Territory Northern Territory Cancer Registry Human Research Ethics Committee for the Northern Territory Department of Health and Menzies School of Health Research(EC00153)
Ref: 2016-2720
Northern Territory Department of Health
Queensland Queensland Cancer Registry QUT University Human Research Ethics Committee (EC00171)
Ref: 1600000880
Griffith University Human Research Ethics Committee (EC00162)
Ref:2018/280
Queensland Health Public Health Act 2005 – RD006690
South Australia South Australian Cancer Registry NSW Population & Health Services Research Ethics Committee (EC00410)
Ref: 2017/HREC0203
Department for Health and Ageing Site Specific assessment (SSA/17/SAH/28)
Tasmania Tasmanian Cancer Registry NSW ethics approval noted Tasmanian Cancer Registry
Victoria Victorian Cancer Registry NSW ethics approval noted Victorian Cancer Registry
Western Australia Western Australian Cancer Registry NSW ethics approval noted WA Department of Health

Download the PDF: NationalCancerAtlas-Cancer-Data

DATA STORAGE

To protect the security and privacy of the data, all data sourced from the [Australian Cancer Database](https://www.aihw.gov.au/about-our-data/our-data-collections/australian-cancer-database) were electronically stored in the SURE (Secure Unified Research Environment) facility, managed by the SAX Institute.

The SURE facility uses a range of information security measures relating to the access, storage and transmission of data including access only via username, passwords and onetime access codes, central storage of data on computer servers housed in a secure data server, and restrictions on file transfers through a moderated gateway.

All the analyses were conducted using statistical software installed within the SURE facility, and accessed using secure remote connection facilities.

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