CSIRO and the Australian Research Data Commons (ARDC) are seeking to engage with the medical research community in developing a ‘National framework for capturing value from clinical data’.
Australia invests a large amount of money in clinical trials, cohort studies and registries each year. In the main, once the research has been completed these data sets lay dormant, inaccessible and isolated with significant untapped value. The accelerating advances in harmonised data and analytics present an opportunity to consider how we could realise the full value of these datasets.
It has been suggested that a nationally supported approach to data storage, enhanced access, curation, provenance, standards, analysis, sharing and reward systems, while protecting privacy, might contribute positively to the health research community. Further information is included in an initial project proposal.
CSIRO and the ARDC will be running workshops to understand the current environment, investigate this premise, and if appropriate build a research-community-led alliance and develop a ‘National framework for capturing value from clinical data’, to guide further infrastructure, research and community activity. These workshops are aimed at research funders, research institutions, peak medical research bodies, national infrastructure providers, research leaders, and key opinion leaders.
ACTA will be attending the first workshop in Canberra on 6 March 2019, to represent the perspective of our members, with future events to be announced. We will keep our members informed about this ongoing conversation.
If you or your organisation are interested in participating in these workshops please contact Kate LeMay at ARDC, kate.lemay@ardc.edu.au. Further details will be announced in early 2019.