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

Abstract

Introduction
The 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 approach
The 2016 Survey of Health Care was administered by the ABS. Over 35,000 responses were weighted to population benchmarks before being linked to
administrative 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 ethics
committees 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.

Specific challenges included sensitivities in response to requested data variables, obtaining private hospital data, understanding state based legislation, particularly in changes to guardianship and consent, working across jurisdictions to meet requirements and communicating linkage protocol.

Results
All hospital linked datasets were received in early 2020 and currently being validated. Analysis of linked data will investigate continuity themes on low urgency
care and potentially preventable hospitalisations.

Conclusion
Five key lessons learned from the cross-jurisdictional data linkage:

1. Engage with jurisdictional-based organisations early. Leveraging existing committees in the first instance can help.


2. Be specific in documentation and approach.


3. Subtly, every state is different. Local context and state legislation matter.


4. Governance ethics and compliance take time. Get started early.


5. Liaise broadly, across and between organisations.