Sydney West Translational Cancer Research Centre
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Data linkage 3 webinar: Ethical considerations in using Linked Data

ARDC / PHRN Joint Webinar




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
- Post-market surveillance of therapeutics

The Australian Clinical Trials Alliance (ACTA) and the Population Health Research Network (PHRN) have 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
- Assist clinical trial researchers to design clinical trials using linked data and apply for access to linked data

We gratefully acknowledge support from the Australian Research Data Commons (ARDC) in delivering this project to you.

Register here:

This presentation will be made available on our website after the event.

This webinar is part 3 in a series of 4.

In this webinar we will cover:
Access to linked data with consent
- Key ethical issues
- Participant information sheets and consent forms
- Data management

Access to linked data without consent
- Key ethical issues
- The legal framework
- The National Statement – Waiver of consent
- Privacy legislation
- Demonstrating respect in the absence of consent