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.

1. 1
Toward National Platforms for Australian Health
Research Data
Canberra March 2019

3. 3
Genomics
Data
BioBank
Data
-omics
Etc…
MBS
Data
Hospitals
Data
Primary
Health
Imaging
data
PBS
data
Clinical studies
data
Births,
deaths,
demography

4. 4
Clinical studies data
Clinical
trials
Cohorts Others?
Registries

5. 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

6. 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

7. 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?

8. “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

9. 9
“how do we want to use
data, and what
infrastructure will allow us
to do that most efficiently?”

10. 10

11. 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?