Australian Clinical Trials Alliance: Have your say on secondary use of data in clinical research

Interested in secondary use of data for Australian research?

Invitation to take part in Australian Clinical Trials Alliance’s (ACTA) online webinar and virtual consultation workshop on behalf of the Australian Research Data Commons (ARDC).

Response requested by 1 June 2021.

ACTA is working with the 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.

We 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.

We are interested in hearing from:

1: researchers involved in the design and/or conducting of clinical trials
2: people who work for a clinical trials/research organisation
3: consumers (patients, carers or people who use healthcare services) who are or have been involved in the design and/or conducting of clinical trials
4: 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

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

You can also register to attend a 1-hour online webinar about the HeSANDA initiative at 3-4pm 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 four sessions: two will focus mainly on issues for consumers/trial participants and two will focus mainly on issues for
researchers. Choose from one the following sessions. Register here.

Consumers/Research participants
16 June from 2pm – 3:30 pm (AEST)
21 June 11am – 12:30pm (AEST)

Researchers/clinical trial organisations
17 June 4:30pm – 6:00pm (AEST)
22 June 5pm – 6:30pm (AEST)

Workshop numbers are limited. If you work for a clinical trials organisation, we recommend only one representative 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

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

Questions
If you have any questions about the consultation process, please contact Fiona Nemeh at ACTA: fiona.nemeh@clinicaltrialsalliance.org.au

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