National Cancer Data Strategy
Cancer Australia does not directly access consumer data. Cancer Australia ensures that due regard for the Privacy Act 1988 and relevant state and territory privacy laws, and the security of consumer data, underpins any work it supports. |
Cancer Australia has developed a National Cancer Data Strategy that outlines ways to improve access to, and consistency in, cancer data collection for the Australian community.
The Towards a National Cancer Data Strategy: Foundation document was made available for comment and feedback from 14 November 2007 to 31 March 2008. The Foundation document outlined what data already exist and identified cancer data needs. It was developed by Professor David Roder in consultation with Cancer Australia’s National Cancer Data Strategy Advisory Group, the Cancer Australia Strategic Forum and other key stakeholders.
Feedback was reviewed and incorporated into the now finalised document - A National Cancer Data Strategy for Australia, which aims to provide direction and support for a collaborative effort to improve cancer data development for the Australian community.
Two companion documents have also been released, to help guide the consistent national development of specialist minimum data sets and to provide information on what data sources already exist for research purposes: Cancer Data to Improve Cancer Survival
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 of $2.1 million to establish a national cancer monitoring centre.
Cancer Australia received funding of $2.1 million for the development of data sets relating to:
- stage, with an emphasis on metastatic disease (Tumour, node and metastases (TNM))* or its equivalent for haematological and other cancers where TNM does not apply
- when recurrences occur (either local or distant); and
- initial treatment modalities delivered.
Further details on the Australian Institute of Health and Welfare component of the measure can be found at http://www.health.gov.au/internet/budget/publishing.nsf/Content/2009-2010_Health_PBS_sup3/$File/AIHW.rtf
Within the context of the cancer monitoring centre, Cancer Australia’s work developing methodologies to collect data on:
- stage, particularly metastasis,
- recurrences and
- treatment.
The development of related data sets 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 TNM or equivalent stage at diagnosis, or treatment data. This is particularly true of collecting the 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
A Cancer Data Working Group has been established to oversee the implementation of the Cancer Data to Improve Cancer Survival measure, and has met twice to date.
Members include nominees from a wide range of organisations and professional bodies, as well as representatives from Cancer Australia’s National Consumer Advisory Group, National Research Advisory Group, and Strategic Forum.
A Request for Tender (RFT) has been advertised to develop and test methodologies to collect the required data. The Request for Tender closed on 15 December 2009, and the evaluation of responses is continuing.
* 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