Introduction
Clinical Quality Registries (CQRs) provide essential insights into the quality and safety of Australia's healthcare system and can also be valuable for research. Linking CQRs with routinely collected administrative data can expand their use for researchers and policymakers. While Australia has the technical infrastructure and expertise to support such linkages, uncertainty around ethical, legal and administrative requirements hampers progress.
Objectives and Approach
Our study aimed to clarify the legal, ethical, and administrative barriers to routine linkage of administrative data with CQRs. A doctrinal analysis of relevant privacy, public health, and data sharing legislation was undertaken to identify the ways in which current legal frameworks allow or restrict data linkage activities. Additionally, we interviewed data custodians and representatives from CQRs, data linkage units, and human research ethics committees to explore how broader governance frameworks support or impede enduring linkage arrangements.
Results
We found that federal, state and territory privacy laws create obstacles to both enduring and ad hoc data linkage, particularly when CQRs rely on a waiver of consent. Furthermore, governance practices across agencies contribute to inconsistent implementation, affecting the feasibility of enduring linkage relationships.
Conclusion
Our findings highlight specific barriers faced by CQRs to routine data linkage and will assist CQRs to navigate existing ethical, legal and administrative frameworks. We propose practical workarounds to support linkage where feasible, and argue for targeted legislative reform to enable enduring, cost-effective, and ethically sound data linkage.