Summary
The Australian Cancer Database: a national statistical asset
High quality data are essential national assets for the effective monitoring of cancer incidence, prevalence, survival and mortality in Australia. These data are vital to governments, clinicians and health services in delivering quality, evidence-based cancer care and broader cancer control initiatives. It is, therefore, important to define the availability, consistency and quality of these data that best serves this purpose.
The Australian Cancer Database (ACD) is collated annually and administered by the Australian Institute of Health and Welfare (AIHW) in collaboration with Australia's cancer registries through the Australasian Association of Cancer Registries.
As the only national collection of cancer incidence data, the ACD forms the backbone of all national cancer statistics produced by the AIHW. It also serves as a valuable resource for national performance reporting, cancer research and data linkage.
Current state: overall very good, with room for improvement
The current state of the ACD was assessed against the 7 dimensions of the Australian Bureau of Statistics (ABS) Data Quality Framework 2009 (ABS 2009): Institutional Environment, Relevance, Timeliness, Accuracy, Coherence, Interpretability, and Accessibility. The ACD was also compared with 9 countries and found to be comparable in most areas, and to lead the world in some.
The goal state: a vision for the future
Ensuring the continued supply of national, responsive, policy-relevant cancer incidence, prevalence, survival and mortality data is of great importance.
The data contained within the ACD are: covered under legislation, publicly funded and for the public good. The use and reporting of these data must always be considered in the context and interest of the public good and broader public needs.
To this end, the AIHW has set the following 5 goals for the future state of the ACD, related to the 7 dimensions of data quality:
- That the ongoing provision, collation, maintenance and dissemination of national cancer incidence and mortality data through the ACD is secured and that appropriate arrangements are in place to support this.
- That the data included in the ACD, and the means of disseminating those data, be appropriate to address the policy, planning and research questions of stakeholders and consumers of Australian cancer incidence and mortality data.
- That the ACD contain incidence and mortality data 12 months from year of diagnosis or death, for reporting at a national level within 18 months from year of diagnosis or death.
- That the ACD data accurately represent cancer incidence and mortality in Australia and that data are consistent and comparable between jurisdictions, internationally and over time.
- That the information needed to aid the interpretation of cancer incidence and mortality data is current, complete and regularly reviewed.
Preliminary material: Acknowledgments; Abbreviations
4 Discussion-securing the Australian Cancer Database, a vision for the future
4.1 Discussion points for consideration
4.2 Conclusion: working toward the goal state
3 Building the Australian Cancer Database
3.1 Jurisdictional data collection
3.2 Providing jurisdictional data to AIHW
3.3 Collating the national dataset
3.4 Disseminating national cancer data
2 The goal state: a vision for the future
2.1 5 goals for the future
2.2 Defining the 'goal state'
2.3 Achieving the goal state
1 The Australian Cancer Database: a national statistical asset
1.1 What is the current state of the ACD?
1.2 How does the current ACD compare internationally?
Appendixes
Appendix A: Australian Cancer Database 2010 Data Quality Statement
Appendix B: ACD agreed data items
Appendix C: Data quality summary-Australian states and territories
Appendix D: Data quality summary-International
Appendix E: Jurisdictional approval matrix
Appendix F: Key stakeholders
End matter: References; List of tables; List of figures