Cancer Australia and the Australian Institute of Health and Welfare received funding of $4.2 million over 4 years in the 2009-10 Budget to improve the range of cancer data and related evidence available at a population level in Australia. The budget measure has two distinct components and the organisations will work closely on the implementation of both.
The Australian Institute of Health and Welfare received funding to establish a national cancer monitoring centre. Further details see Australian Institute of Health and Welfare component of the measure
Cancer Australia received funding to test the collection of:
- Cancer stage, with an emphasis on metastatic disease (Tumour, Node and Metastases  - TNM) or its equivalent for haematological and other cancers where TNM does not apply;
- Cancer stage when recurrences occur (either local or distant); and
- initial treatment modalities delivered.
The collection of these data, and development of data sets specifications will, over time, improve the availability of information on national trends and patterns of risk factors, diagnoses, health service utilisation and health outcomes. Ultimately, this will contribute to better policy and practice in cancer control.
Addressing data gaps and inconsistencies
In Australia, there are currently only two census points where cancer data collection is mandatory: at diagnosis (incidence) and at death (mortality). With advances in prevention, screening and treatment, many people affected by cancer are now living longer, either free of disease or with recurrent disease, yet few national data exist to monitor quality-of-life after treatment, intermediate and long-term toxicities, and effects of new treatments and technologies.
Australian population-based cancer registries collect high-quality incidence and mortality data but were not established to collect Tumour Node and Metastasis (TNM) (or equivalent) stage at diagnosis, or treatment data. This is particularly true of collecting the metastasis (M) component, where the required information may not be available from cancer notifications or pathology reports.
A National Cancer Data Strategy for Australia and the technical papers released with it in December 2008, noted the lack of a national approach to the collection of data on TNM stage as a fundamental gap in population-based data collections.
Data on TNM (or equivalent) stage, as well as recurrences, will add significant value to existing data on incidence and mortality for monitoring service needs and outcomes across the population. These data may be analysed by: cancer type (site and histology), age, gender, area of residence, area remoteness, area socio-economic status, Indigenous status and country of birth.
Data on initial treatment modalities delivered will assist in determining whether patterns of care by stage at diagnosis are consistent with best practice, whether additional promotion of recommended protocols is needed, and, if so, where such promotion should be targeted. These data will also assist in determining whether patient populations exposed to different treatments have different outcomes, including different survival rates.
Progress to date
The Western Australian Cancer and Palliative Care Network is evaluating the use of a clinical management system (MMEx) for collecting these data in Western Australia and at least one other jurisdiction. This project will also evaluate the processes and effectiveness of linking these data with other external sources of data such as the Western Australian Cancer Registry.
- The Cancer Council Victoria is undertaking a complementary project, trialling the use of data acquisition technology to collect the required data from source records such as imaging studies, laboratory tests and endoscopic staging procedures.
This project focuses on cancer types and cancer lesions often detected through means other than tissue specimens where results are not normally notified to cancer registries.
A specific component of this project is trialling the collection of clinical TNM (cTNM). This trial will focus on the collection lung cancer data and pancreatic cancer data.
 T- tumour: extent of primary tumour/ N - nodal status: the absence or presence and extent of regional lymph node metastases/M – metastasis status: the absence or presence of distant metastasis