title: Realising opportunities for evidence-based cancer service delivery and research: linking cancer registry and administrative data in Australia.
abstract: The traditional roles of Australian cancer registries have been incidence, mortality and survival surveillance although increasingly, roles are being broadened to include data support for health-service management and evaluation. In some Australian jurisdictions, cancer stage and other prognostic data are being included in registry databases and this is being facilitated by an increase in structured pathology reporting by pathology and haematology laboratories. Data linkage facilities are being extended across the country at national and jurisdictional level, facilitating data linkage between registry data and data extracts from administrative databases that include treatment, screening and vaccination data, and self-reported data from large population cohorts. Well-established linkage protocols exist to protect privacy. The aim is to gain better data on patterns of care, service outcomes and related performance indicators for health-service management and population health and health-services research, at a time of increasing cost pressures. Barriers include wariness among some data custodians towards releasing data and the need for clearance for data release from large numbers of research ethics committees. Progress is being made though, and proof of concept is being established.
authors.affiliation: Cancer Epidemiology and Population Health, University of South Australia, Adelaide, South Australia, Australia; South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.
authors.forename: D M
authors.initials: DM
authors.lastname: Roder
authors.forename: K M
authors.initials: KM
authors.lastname: Fong
authors.forename: M P
authors.initials: MP
authors.lastname: Brown
authors.forename: J
authors.initials: J
authors.lastname: Zalcberg
authors.forename: C E
authors.initials: CE
authors.lastname: Wainwright
mesh_terms: D001315:Australia; D016208:Databases, Factual; D003695:Delivery of Health Care / Q000458:organization & administration*; D019317:Evidence-Based Medicine; D006302:Health Services Research / Q000458:organization & administration*; D006801:Humans; D008498:Medical Record Linkage; D009369:Neoplasms / Q000628:therapy*; D012042:Registries
keywords: cancer registries; data access; data linkage; health-service management; privacy