Unlocking the value from publicly funded Clinical Research Data

28 Jun 2019
Sydney
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CSIRO and the Australian Research Data Commons (ARDC) are seeking to engage with the health and medical research community in developing a ‘National framework for capturing value from publicly funded clinical research data’. We will be running workshops to understand the current environment, investigate this premise, and if appropriate, build a research-community-led alliance and move towards developing a framework to guide further infrastructure, research and community activity.

A first workshop on 6th March in Canberra identified several key themes as important issues that must be resolved to enable greater sharing of research data. On the basis of these results we would now like to invite participants to discuss in more detail issues addressing the key barriers and enablers to creating a digital platform for sharing clinical research data.

The discussion will specifically address:

  • What are the essential elements of a governance structure for a data sharing network?
  • What standards for ethics and consenting must be put in place for an Australian data sharing network?
  • What other key barriers must be addressed for such a system?
  • To aid this discussion CSIRO and ARDC have commissioned an economic assessment and market scan, the initial results of which will be presented at this workshop.

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