Improving Cancer Data

Stage, Treatment and Recurrence (STaR)

Australian population-based cancer registries routinely collect information on cancer incidence and mortality. The need for high quality, comprehensive national data on the stage (Tumour, Node, and Metastasis - TNM) of cancer at diagnosis, the treatments applied to cancers and the frequency of recurrence of cancer after treatment to supplement these data is widely recognised.

Cancer Australia is progressing and implementing methodologies for collecting/ collating and reporting data relating to cancer stage, treatments, and recurrence of cancer at the national level. This program of work incorporates the learnings from the two pilot projects conducted in Victoria and Western Australia which demonstrated the feasibility of collection of such data by the Population Based Cancer Registries (PBCRs) and integration with existing mortality and incidence data.

The ability to collect, monitor and report data on cancer stage, treatment and recurrence (STaR) at a national level will enhance our ability to understand:

• Variability in cancer stage at diagnosis across tumour types, populations groups and geographical locations,
• Treatments received compared to best-practice care recommendations, and
• Patterns of cancer recurrence.

The collection/ collation and reporting of these data will, over time, improve the availability of information on national trends and patterns of cancer care, health service utilisation and cancer outcomes. Ultimately, this will contribute to better policy and practice in cancer control and improved outcomes for Australians affected by cancer.

Cancer Australia has engaged with various stakeholders to discuss the current status and opportunities for the collection/ access/ analysis and reporting of cancer data on stage, treatment and recurrence for major cancers. Broad support for the collation and reporting of these national data has been forthcoming.

Cancer stage at diagnosis

The lack of information on cancer stage at diagnosis is a fundamental gap in Australia’s national cancer data.

Data on cancer stage at diagnosis will add significant value to existing data on incidence and mortality for monitoring service needs, patterns of care and outcomes across the population.

Progress to date:

• Cancer Australia has supported the Cancer Council Victoria to develop Business Rules to derive TNM stage at diagnosis for the top five high incidence cancers (prostate, breast, lung, bowel, melanoma) based on data sources available to all population-based cancer registries.
• These Business Rules will assist all Australian population-based cancer registries to collect and code cancer stage at diagnosis  for these cancers in a consistent manner.
• The Business Rules have been tested/reviewed by all states and territories to ensure applicability across cancer registries.
• The rules to be endorsed by the Australasian Association of Cancer Registries.
• Cancer Australia is also supporting the development and testing of a set of complementary Business Rules for deriving cancer stage at diagnosis for paediatric cancers. This project is being led by the Cancer Council Queensland, which funds and manages the Australian Paediatric Cancer Registry (APCR) - a complete register of all paediatric cancer cases diagnosed in Australia since 1983. 
• In conjunction with the Australian Institute of Health and Welfare, Cancer Australia is exploring ways to transfer TNM stage data into a national database on an ongoing basis.

Cancer treatment data

National data on cancer treatment tells us, at a population level, what treatments are received following a diagnosis of cancer. In combination with data on cancer stage, mortality and survival, national treatment data will provide information on patterns of cancer care and can further our understanding on unwarranted variations in cancer outcomes.

Progress to date:

Cancer Australia has scoped treatment data availability through existing data sources such as the MBS, PBS and national hospitalisation databases to examine the coverage of these databases for data on cancer-related surgeries, systemic agent therapies (including chemotherapy, immunotherapy, and hormone therapy) and radiotherapies.

A phased approach to the linkage and reporting of these data is being adopted. 

• Phase 1: will extract and collate high-level publically-available treatment data from national data sources to provide an overview of treatment data provided in Australia, and to inform development of a core set of treatment data items for future reporting purposes. 
• Phase 2: will determine the core treatment data items for ongoing reporting and will test the feasibility of linking these data items to data on cancer incidence, stage and mortality and survival.
• Phase 3: will be on the ongoing linkage and reporting of these key data overtime.