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Introduction to vision and scope

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Presentation by Dr Adrian Burton, ARDC, to the 'Unlocking value from publicly funded Clinical Research Data' workshop, cohosted by ARDC and CSIRO at ANU on 6 March 2019.

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Introduction to vision and scope

  1. 1. 1 Toward National Platforms for Australian Health Research Data Canberra March 2019
  2. 2. 3 Genomics Data BioBank Data -omics Etc… MBS Data Hospitals Data Primary Health Imaging data PBS data Clinical studies data Births, deaths, demography
  3. 3. 4 Clinical studies data Clinical trials Cohorts Others? Registries
  4. 4. 1. Australia invests considerably in clinical studies and a significant output of those studies is data 2. There is (potential) value in the output data from these studies for increased integrity and innovation in research. 5 Workshop Background
  5. 5. 1. Current data maintenance and exploitation arrangements are at worst non- existent or at best not reflective of their status as national research data assets. 2. A nationally supported/coordinated infrastructure approach to the data and its re-use would contribute positively to the health research community. 6 Workshop Background
  6. 6. 7 Today’s objective 1. (How) would the research community like to use clinical studies data for research? 2. What kind of coordination/infrastructure would make that use effective? 3. What could help make this happen? What could stop it? 4. Who could take this idea forward?
  7. 7. “National research infrastructure comprises the nationally significant assets, facilities and services to support leading-edge research and innovation. It is accessible to publicly and privately funded users across Australia, and internationally.” 8 Infrastructure
  8. 8. 9 “how do we want to use data, and what infrastructure will allow us to do that most efficiently?”
  9. 9. 10
  10. 10. 11 1. What contribution can this data play to research integrity and reproducibility? 2. What new research activity can be enabled if this data is managed as research infrastructure asset? 3. Where can time be saved? What is the research value in clinical study data?

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