Trial Link
About the Program
Trial Link is a national project funded by the National Collaborative Research Infrastructure Strategy (NCRIS) that is making linked administrative health data more accessible, understandable and usable for clinical trials and medical product development. Through Trial Link, we are:
- Improving the efficiency and cost-effectiveness of data linkage in clinical trials
- Enabling clinical trial researchers to more easily discover, access and learn about linked data.
What We Heard from Researchers
In-depth consultations with clinical trialists, regulatory affairs professionals and private sector drug and device developers across Australia confirmed a strong interest in linked health data, however, they also identified significant barriers that prevented its use. Researchers told us they needed:
Better visibility of linked data opportunities
Researchers were often unaware that Data Connect Australia existed or that they were eligible to use linked administrative data to support their trial.
Access to the right data at the right time
Researchers lacked access to more aggregate and other fit-for purpose data products needed for early planning, feasibility assessment and study design.
Clearer governance guidance
Researchers found the legal and ethical requirements for using linked data difficult to navigate.
Simpler access pathways
Multiple applications across jurisdictions made the process of accessing linked data complex, confusing and time-consuming.
Training and capacity building
Researchers had limited practical experience designing studies that incorporate linked data and wanted access to clear information and guidance materials.
Transparency for cost and timeframes
Researchers had limited visibility of the costs, timelines and resourcing requirements associated with obtaining linked data, making project planning and budgeting difficult.
Guiding Pillars
Trial Link is developing a national integrated gateway that enables clinical trial researchers to discover, link, access and learn about linked real-world data. Trial Link has funded a program of activities across the following themes:
Discover
Help researchers find out what data is available for linkage and determine if it’s fit for purpose.
Data
Develop new data products so researchers can assess feasibility and data quality before applying.
Access
Make access to linked data transparent and streamlined.
Guide
Provide guidance on the ethics, legal and social implications of using linked data, including clarity on private sector eligibility, consumer requirements and data governance.
Learn
Develop an online training program, on the integration of linked data into clinical trial design.
What Trial Link Has Delivered
Price Calculators – Live
Self-service online calculators providing instant cost estimates for data linkage and secure research environments across Australian jurisdictions (WA, VIC, TAS, SA/NT, SURE, AIHW, National Health Data Hub, ABS, PLIDA).
Clinical Trials Training – Live
Online training covering linked data fundamentals, ethics and legal requirements and how to incorporate linked data into clinical trials.
Synthetic Data – Coming soon (WA and Vic only)
Test before you commit. A year of non-representative data replicating the structure and quality of administrative datasets, so researchers can assess suitability early in the planning process.
SampleScope – Coming soon (Vic only)
A feasibility tool, providing a cohort count indicating the number of people who meet a study’s specified criteria.
Metadata Platform – Live
Browse to find data relevant to your clinical trial. Expanded to include clinical quality registries with consent to link, plus a new cohort-specific metadata template.
Data Access Pathways Explorer – Live
Self-service online tool that lets you explore and identify which data access pathways are available for your linked data research project.
Data Utility Comparison Study – Coming soon
Online training covering linked data fundamentals, ethics and legal requirements and how to incorporate linked data into clinical trials.
CrossLink – Coming Soon
A co-designed governance framework for the routine linkage of clinical registry data with administrative datasets.
Delivered in Partnership
Funding and Acknowledgements
Trial Link is funded by the Department of Education as part of the NCRIS program. Data Connect Australia acknowledges the clinical trialists, researchers, and experts who contributed to consultations and user testing, and thanks Future Friendly for their collaboration during the consultation stage.