For effective planning and efficient use of resources in cancer control activities, information on the burden of cancer on the community is required. There is a need to know how cancer and its risk factors affect different population sectors, how it is being managed, the gaps that exist in service availability, and the impacts of policy initiatives on outcomes.4
Cancer Data Sources
The National Cancer Data Strategy provides a framework of strategies and activities which provide direction for collaborative efforts to increase data availability, consistency and quality.4 Currently in Australia, data collection is mandatory at diagnosis (incidence) and at death (mortality). Further rigorous processes for data collection, monitoring and availability are required for broad population health surveillance and research, and to improve cancer prevention, screening, treatment, and support for people affected by cancer, including caregivers.4
Increased data availability has been raised as a priority for:4
- monitoring and evaluating cancer service delivery, including assessing patterns of care and outcomes of care in response to policy change
- assessing the cost-effectiveness of alternative service models and treatment pathways
- determining the effects of introducing new technologies.
Better data availability is being sought to monitor:4
- quality of life, function and other aspects of survivorship after cancer treatment
- intermediate and long-term toxicity and other late effects, especially of new treatments
- consumer views on service needs, access and satisfaction with service provision.
Common data sources in Australia include:4, 5
- State and territory population-based cancer registries - Australian Cancer Database (AIHW)
- Australian Paediatric Cancer Registry (APCR)
- Clinical cancer registries
- Biospecimen databases
- Cancer screening registries.
The cancer data collection points across the cancer trajectory and the data needs which they aim to meet are summarised in Figure 1: Australian cancer data needs and sources along the cancer pathway.5
Figure 1: Australian cancer data needs and sources along the cancer pathway 5
The National Centre for Monitoring Cancer (NCMC) was established in 2009 to respond to perceived gaps in service and aims to provide accessible, policy-relevant national information for evidence-based decisions across the cancer pathway.5 NCMC have developed a conceptual model of the cancer data cycle (Figure 2). The cycle illustrates how data are collected and analysed to form information and evidence, which in turn are transformed into knowledge to guide decisions towards better health outcomes which can be further measured by data.5
Figure 2: A conceptual model of the cancer data cycle5
Access A National Cancer Data Strategy for Australia4 and describe how data has been used in cancer control activities in your local / regional area by policy makers, planners, administrators and/or service providers.