CROSS-Link
Clinical Registries: Optimised and Streamlined Solution for Data Linkage
The challenge:
The CROSS-Link project aims to collaboratively design a governance framework to enable routine updating of clinical registries with administrative data while meeting required legal, ethical, and privacy standards.
Australia is home to more than 120 clinical registries, each working to improve patient outcomes through quality assurance reporting and/or research.
Linking registry data with existing population-based administrative data – such as hospital admissions, emergency department presentations, the Medicare Benefits Schedule, the Pharmaceutical Benefits Scheme and the National Death Index – creates an efficient and cost‑effective way to collect long‑term health outcomes for registry participants. This linkage supports a more comprehensive understanding of patient pathways and outcomes over time.
To date, access to linked administrative data has largely been limited to individual research projects with specific aims and defined timeframes. However, clinical registries are ongoing collections where new participants are continuously added, generating ongoing linkage needs rather than one-off linkages tied to a single research purpose.
Routine linkage, defined as repeated linkage at set intervals (e.g. annually), rather than ad hoc, one-off linkage, offers registries the opportunity to strengthen quality improvement activities and enhance their ability to deliver better care and outcomes for Australians.
Our collaborators:
The PHRN is working with three key agencies to deliver the CROSS-Link project:
- Australian Institute of Health and Welfare
- NSW Ministry of Health
- Monash University
The approach:
CROSS-Link is a collaborative project – funded and led by PHRN – being conducted with project partners the Australian Institute for Health and Welfare, the NSW Ministry of Health and Monash University.
STAGE 1 – Three work programs have been undertaken:
1) A governance program investigating the ways in which legal and ethical frameworks across Australian jurisdictions enable or restrict routine linkage with clinical quality registries.
2) A consumer involvement program conducting focus groups and interviews to understand the concerns, hopes and priorities around data linkage of individuals in a clinical registry, carers and families.
3) A technical advice program designing feasible data flows to support routine data linkage, including surveying the governance arrangements and technical requirements of clinical registries affecting their capacity to undertake data linkage.
The CROSS-Link project will conclude on 30 June 2026, after which outputs will be shared with key stakeholder groups.
STAGE 2 – The CROSS-Link Co-Design Process is underway
Over the first half of 2026, this co-design process will bring together participants from around Australia: consumers, clinical registry representatives and people with expertise in areas such as governance, ethics, policy and data linkage.
Through a combination of online and in-person activities, participants will collaboratively design a governance framework to enable enduring data linkage between clinical registries and administrative data collections.
Targeted guidance materials will be designed to support various end-users of the governance framework, with consumers leading the design of consumer-focused materials.
Status:
Ongoing