ACTA: Have your say on secondary use of data in clinical research

Are you interested in secondary use of data for Australian research? Take part in ACTA’s online webinar and virtual consultation workshop on behalf of the ARDC.

ACTA is working with the Australian Research Data Commons (ARDC) to gather insights and feedback about the Health Studies Australian National Data Asset (HeSANDA).

The HeSANDA 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.

As a first step, the initiative is focusing on data and information collected from investigator-initiated clinical trials.

ACTA are inviting people who are involved in clinical trials research in Australia to attend a 90-minute virtual consultation workshop to provide views on how a national data asset could be designed, built, and implemented in Australia.

They are interested in hearing from:

  • researchers involved in the design and/or conduct of clinical trial
  • people who work for a clinical trials / research organisations
  • consumers (patients, carers or people who use healthcare services) who are or have been involved in the design and/or conduct of clinical trials
  • clinical trial participants (people who have taken part in, are taking part in or are considering taking part in a clinical trial).

Be informed before providing feedback

ACTA ask that everyone providing feedback through the consultation process reads the background paper.

You can also register to attend a 1-hour online webinar about the HeSANDA initiative at 3.00–4.00pm AEST on Tuesday 8 June.

The webinar will provide a brief background on secondary data use and the proposed approach to designing a national data asset to support secondary use of data from clinical trials in Australia. The webinar will provide a useful background for anyone attending the consultation workshops and will be of particular value for consumers.

Have your say

Once you have read the background paper and/or attended the online webinar, you can have your say on the HeSANDA initiative in one of two ways:

  1. Attend a 90-minute virtual consultation workshop in June.

We are running 4 sessions; two will focus mainly on issues for consumers / trial participants and two will focus mainly on issues for researchers. Choose from one of the following four sessions. Register Here.

Consumers / Research Participants:

  • 16th of June from 2.00 pm to 3:30 pm (AEST)
  • 21st of June 11:00 – 12:30 pm (AEST)

Researchers / clinical trial organisations:

  • 17th of June 4.30 – 6.00 pm (AEST)
  • 22nd of June 5.00 – 6.30 pm (AEST)

Workshop numbers are limited. If you work for a clinical trials organisation, we recommend only one representative to attend the virtual workshop.

Consumers and Research Participants who join the consultation will be reimbursed for your contribution. ACTA will discuss the details with you further after your EOI has been received.

      2. Complete the online survey

Information from the consultation process will inform the next stage of planning for the HeSANDA initiative. For more information, see the background paper.

If you have any questions about the consultation process, please contact Fiona Nemeh at ACTA:

Response required by 1st June 2021.