Background and Context:
Australian cancer data strategies include increasing the range of data collected by population-based cancer registries and linking these data with data from other registries, bio-specimen databases, administrative and research databases and surveys, to obtain a broader range of data to support population health monitoring, health-service management and research. Prototype systems indicate the utility of this strategy.
Aim:
To link registry data with administrative and other data at a person level to provide de-identified integrated data, employing privacy-protecting pathways; to demonstrate the value of these integrated data for population health and health services monitoring and research; and to establish this as an ongoing process.
Strategy/Tactics:
These include: (1) linking data from population-based cancer registries, bio-specimen databases, screening registries, hospital inpatient and emergency department data, radiotherapy databases, health insurance data, clinical cancer registries, and population based cohort data covering behavioral environmental and other risk factors, and patient reporting; (2) adding stage and other prognostic data from structured pathology and other pathology and clinical reporting to population-based registries; (3) testing data validity with specialist clinical registries and allied databases; (4) presenting output data to stakeholders; and (5) publishing output data in the international peer reviewed literature.
Programme/Policy Process:
Develop prototype systems at a jurisdictional level with ethics committee approvals, and using privacy-protecting data linkage processes, and demonstrate by example the value of output data for health and health-service monitoring and research to policy makers, service providers, researchers and consumers.
Outcomes/What was learned:
Challenges include: collecting data on stage and other prognostic markers in population-based registries; and gaining administrative approvals for access to existing databases. Prototype systems at a jurisdictional level show “proof of concept” and that the challenges are not so much technical as gaining administrative approvals for data access to all the data required.