Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health data

Abstract

OBJECTIVE: To describe the challenges of obtaining state and nationally held data for linkage to a non-government national clinical registry.METHODS: We reviewed processes negotiated to achieve linkage between the Australian Stroke Clinical Registry (AuSCR), the National Death Index, and state held hospital data. Minutes from working group meetings, national workshop meetings, and documented communications with health department staff were reviewed and summarised.RESULTS: Time from first application to receipt of data was more than two years for most state data-sets. Several challenges were unique to linkages involving identifiable data from a non-government clinical registry. Concerns about..