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Five Key Lessons for A Cross-Jurisdictional Data Linkage Project Win-Win

Sarah Jones · International Journal of Population Data Science · 2020

IntroductionThe Coordination of Health Care study was developed by the Australian Institute of Health and Welfare in partnership with the Australian Bureau of Statistics (ABS) to fill an important data gap relating to patient-reported experiences of continuity of care across Australia.
 Objectives and approachThe 2016 Survey of Health Care was administered by the ABS. Over 35,000 responses were weighted to population benchmarks before being linked toadministrative datasets including hospital and emergency department care, Medicare Benefits Schedule and Pharmaceutical Benefits Scheme.
 These linked datasets aim to provide a comprehensive picture of patient journeys in relation to patient-reported experiences of continuity of care.
 The cross-jurisdictional data linkage spanned state and federal agencies, data linkage units and state health departments. Approvals across 10 different ethicscommittees were sought. Study management included governance and compliance with state and federal privacy legislation, negotiation of safe transfer of sensitive information across organisations, data interrogation, understanding data quality and study limitations.
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