ACTA is supporting a stakeholder consultation process to inform and review the scope of the ARDC HeSANDA initiative.
What is the HeSANDA initiative?
HeSANDA is an Australian initiative designed to support sharing of data generated through health research studies. The initiative aims to build a national collection of data generated through Australian health research and support appropriate and ethical sharing of the data with other Australian researchers.
By supporting secondary use of data from health research, HeSANDA aims to stimulate new research ideas, increase the impact of health research, increase the benefits of investment in health research, and ultimately improve the health and wellbeing of people in Australia.
The initiative is being developed using a phased approach. The initial phase of the project is focusing on the secondary use of data from investigator-initiated clinical trials. More information can be found in the background paper.
Why are we consulting?
It is important that the design of HeSANDA considers views and input from people whose individual or trial data may be included in the data asset in future.
ARDC has already undertaken some consultation activity and has developed some initial principles and investment areas for HeSANDA. We want to check this initial thinking with people involved in clinical trials in Australia. We also want to explore researcher and trial participants' willingness to share data from clinical trials to support other research activities. And we want to hear about any particular issues that should be considered in relation to particular types of data or types of clinical trials.
Who are we consulting with?
During this consultation phase, we are focusing on insights from:
- clinical triallists – people and organisations involved in designing and running investigator-initiated clinical trials in Australia
- consumers – people from consumer organisations with an interest in clinical research; this includes consumer advisory groups from clinical trial organisations
- research participants – people who are currently or who have previously taken part in a clinical trial in Australia.
How to have your say
You can provide feedback to the consultation in two ways:
- register to attend one of the consultation workshops to be held in June 2021.
- complete the HeSANDA stakeholder consultation survey.
Before registering or completing the survey, please download and read the background paper and watch the background and context video recording. Your participation in the consultation will rely on you having a background understanding of the initiative, so please take the time to read the background paper carefully.
How we will use your responses
Feedback from the consultation workshops and survey will be collated and provided to the ARDC to help inform the design phase of the project.
Questions and assistance
If you have any questions about the consultation, or if you have any technical issues registering to attend a workshop or completing the survey, please contact Fiona Nemeh at firstname.lastname@example.org.
For further information about the HeSANDA initiative, visit the ARDC website.