Data linkage is the bringing together of records from different data collections related to the same individual. It can be useful in the context of clinical trials in a number of ways, including:
- A less burdensome method of data collection for participants during a clinical trial;
- Cost-effective medium to long term follow-up of clinical trial participants;
- Measurement of healthcare use before and after an intervention to assist in effectiveness and health economic analysis, and
- Post-market surveillance of therapeutics.
Australia has a national data linkage network, the Population Health Research Network (PHRN) that enables existing health data from around the nation to be brought together and made available for research purposes. To date, the PHRN infrastructure has been infrequently used by clinical trials researchers.
With the support of the ARDC, the Australian Clinical Trials Alliance (ACTA) and the PHRN developed this series of webinars to:
- Introduce clinical trial researchers to the PHRN facilities and services available;
- Demonstrate the benefits of using linked data in clinical trials research, and
- Assist clinical trial researchers to design clinical trials using linked data and apply for access to linked data.
This series ran between March and April 2019 and consisted of four sessions:
PHRN Data Linkage 1 – Designing CTs using Linked Data – Dr Felicity Flack
PHRN Data Linkage 2 – Accessing Linked Data – Dr Felicity Flack
PHRN Data Linkage 3 – Ethical considerations – Dr Felicity Flack
PHRN Data Linkage 4 – Accessing MBS/PBS data – Dr Anna Kemp-Casey