During May and June 2021, ACTA supported a stakeholder consultation process to inform and review the scope of the Australian Research Data Commons (ARDC) Health Studies Australian National Data Asset (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 below.
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 had already undertaken some consultation activity and has developed some initial principles and investment areas for HeSANDA. We wanted to check this initial thinking with people involved in clinical trials in Australia. We also wanted to explore researcher and trial participants' willingness to share data from clinical trials to support other research activities. And we wanted to hear about any particular issues that should be considered in relation to particular types of data or types of clinical trials.
Who did we consult with?
During this consultation phase, we focused 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.
Resources from the consultation
Please find below some resources related to the consultation process.
On behalf of the ARDC, ACTA held a series of virtual consultation workshops and an online survey in May and June 2021 to gather insights on how a national data asset could be designed, built, and implemented in Australia. The sessions were well attended with over 90 people giving input and many more completing the survey. Consumer/Research Participant session themes included ethics, the need for transparency in consent, issues of identification from small data sets, and who would be able to access data as well as the need for consumers to be involved in co-design of the data asset. From the Triallist sessions, key themes included Intellectual Property, ethics and consent, the governance process for data sharing, considerations for international trial data, longitudinal data and the importance of considering the needs of consumers and trial participants involved in clinical trials. The consultation confirmed the support of the sector for the development of a national health data asset for clinical trials. Input from the consultation will be taken into consideration in the design phase of the data asset, which will begin in July 2021. On behalf of ACTA and the ARDC, we would like to thank all those who attended the pre-education webinar, consultations and gave input through the survey for their valuable contributions to the HeSANDA initiative. An Executive Summary of the key findings is now available.
How we used your responses
Feedback from the consultation workshops and survey were 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, please contact Fiona Nemeh at [email protected].
For further information about the HeSANDA initiative, visit the ARDC website. The ARDC is funded through the National Collaborative Research Infrastructure Strategy.