title: A review of linked health data in Australian nephrology.
abstract: Linked health data bring together data about one person from varying sources such as administrative health datasets, death registries and clinical registries using a process that maintains patient privacy. Linked health data have been used for burden of disease estimates and health-care planning and is being increasingly use as a research methodology to study health service utilisation and patient outcomes. Within Australian nephrology, there has been limited understanding and use of linked health data so far, but we expect that with the increasing availability of data and the growing complexity of health care, the use of such data will expand. This is especially pertinent for the growing elderly population with advanced kidney disease, who are poorly represented in other types of research studies. This article summarizes the history of linked health data in Australia, the nature of available datasets in Australia, the methods of access to these data, privacy and ethical issues, along with strengths, limitations and implications for the future.
authors.affiliation: The George Institute for Global Health, The University of Sydney.
authors.forename: Sradha
authors.initials: S
authors.lastname: Kotwal
authors.affiliation: Sydney School of Public Health, The University of Sydney.|Centre for Transplant and Renal Research, Westmead Hospital.
authors.forename: Angela C
authors.initials: AC
authors.lastname: Webster
authors.affiliation: Menzies School of Health Research, Charles Darwin University, Darwin.
authors.forename: Alan
authors.initials: A
authors.lastname: Cass
authors.affiliation: The George Institute for Global Health, The University of Sydney.|Concord Clinical School, The University of Sydney, Sydney, Australia.
authors.forename: Martin
authors.initials: M
authors.lastname: Gallagher
mesh_terms: D022126:Access to Information; D001315:Australia; D003219:Confidentiality; D057225:Data Mining / Q000941:ethics / Q000639:trends; D057286:Electronic Health Records / Q000941:ethics / Q000639:trends; D005544:Forecasting; D006302:Health Services Research / Q000941:ethics / Q000379:methods* / Q000639:trends; D006801:Humans; D016247:Information Storage and Retrieval / Q000941:ethics / Q000639:trends; D007674:Kidney Diseases / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy; D009398:Nephrology / Q000941:ethics / Q000379:methods* / Q000639:trends
keywords: Australia/epidemiology; data collection; health services research; medical record linkage; outcome assessment (health care)