Where does the data come from?
New cases of cancer in Queensland are reported to the Queensland Cancer Register (QCR), which compiles a list of names, gender, dates of birth, residential postcodes, and diagnosis information on all Queensland residents with cancer.
The names and other identifying information from the QCR and other sources are then linked to the Deaths Registry and various hospital and clinical databases throughout Queensland to get information on cancer mortality and treatments.
Once the links are established, the data is de-identified by assigning patients with unique identification numbers and deleting the names from the database.
The data collection, linking, and reporting of this cancer data is performed under the auspices of the Queensland Cancer Control Safety and Quality Partnership, a Quality Assurance Committee gazetted under Part 6, Division 1 of the Hospital and Health Boards Act 2011.
See the following link for more information:
Inclusion and Exclusion Criteria
Cancer patients are included in the Explorer if they meet all of the following criteria:
- Have a record in the Queensland Cancer Register of having been diagnosed with notifiable cancer
- Have a Queensland residential address at time of diagnosis
The following cases are excluded from the Explorer even if they have been notified with a cancer to the Cancer Register:
- Patients whose first diagnosis with a given cancer occurred while they were residents of NSW, Victoria, or other region outside Queensland
- Patients with basal and squamous cell carcinoma of skin (C44, M805-M811)
Queensland Oncology Repository
This centralised repository holds information collected from over 60 data systems and cancer care providers across Queensland. The Cancer Alliance Queensland works collaboratively with the data custodians and cancer care providers to keep the data up to date and relevant.
For more information, visit https://cancerallianceqld.health.qld.gov.au/data-access
Queensland Cancer Register
The Queensland Cancer Register (QCR) operates under the Public Health Act 2005 to receive information on cancer in Queensland. The Cancer Register is a population-based registry and maintains a register of all cases of cancer diagnosed in Queensland since the beginning of 1982 (excluding basal and squamous cell carcinomas).
Notification of cancer is a statutory requirement for all public and private hospitals, nursing homes and pathology services throughout Queensland. Over 90% of cancer notifications are now being received electronically.
In May 2017, QCR’s legacy database was formally decommissioned and replaced with a new sophisticated data collection application known as QOOL-R. This system contains patient demographic, cancer diagnosis, stage and death information from a range of electronic sources including pathology, hospital notifications and the Register of Births, Deaths and Marriages. This information is pre-populated in QOOL-R for the coders to verify, minimising the effort of manual data entry and increasing accuracy. Due to the accessibility to electronic sources and new processes for collating information, patient demographics such as Unknown Indigenous status has improved significantly.
The QOOL-R application electronically collects and collates information, which better aligns to current medical understanding and more adequately reflects the diagnosis and treatment patterns we see today for Queensland cancer patients regarding the capture of the type and number of cancer cases. The application allows for a more complete accounting of cancer incidence and mortality.
The QCR incidence and mortality data is based on the International Classification of Diseases for Oncology, 3rd edition (ICD-O-3) topography and morphology codes. Due to updates to the ICD-O-3 codes by the International Agency for Research on Cancer (IARC) (World Health Organisation (WHO)), some of the numbers for certain cancers may have increased compared to previous years.
The main coding updates to ICD-O-3 have changed in behaviour and therefore impact on the incidence and mortality counts and rates are:
- Appendiceal carcinoid tumours have changed from an uncertain behaviour to an invasive cancer, and are now included.
- Myeloproliferative disorders and myelodysplastic syndromes. These have changed from an uncertain behaviour to an invasive cancer, and are now included.