Data driven research to improve cancer outcomes and transformation of high-performing cancer health services can only be achieved through access and linkage of population level and clinical data. Yet, despite the availability of granular data sources in Australia, many research initiatives suffer from difficulties in accessing the data. Internationally, the development of the European Health Data space adopts the vision of one single European Digital Market creating an innovative and competitive data infrastructure. Data linkage at a national scale also is a priority in the Australian Cancer plan as concluded in the April 2021 Ministerial roundtable.
This presentation will share international experiences of data driven research to improve cancer outcomes, such as through the analysis of treatment variation and treatment cost across episodes of care to identify areas of significant resource utilisation, out-of-pocket payments and unmet need. Rather than visualising the data, advanced methods, like Artificial Intelligence or micro-simulation models, are increasingly used to optimise care pathways.
Several Australian data linkage initiatives are launched, such as the CanDLe initiative (NSW), STaR project (Cancer Australia), VCCC Data-hub and Monash clinical registries (Victoria). Also, an increasing number of projects now prepare for accessing these datasets. The MRFF funded PRIMCAT project has now access to a data set of nearly 190,000 patients over a 10-year period and linked to MBS and PBS service items. This enables a large program of work into the availability and uptake of new cancer treatments in metropolitan and regional areas.
With access to data becoming a competitive advantage for the digital transformation and sustainability of health, it is essential we develop streamlined and transparent pathways for data requests and access. This can only be achieved in collaboration and with the aim to share data and to make the health system future proof for the benefit of our patients.