Mrs Lien Le1, Dr Hugo Leroux2, Mrs Kate LeMay1, Dr Adrian Burton1, Prof Lynne Cobiac2, Dr Jurgen Fripp2, Dr Liming Zhu2
1Australian Research Data Commons, Brisbane, Australia, 2Commonwealth Scientific Industrial Research Organisation, Australia
Australia spends hundreds of millions of dollars on clinical or health research annually. Once completed, however, this data remains dormant and inaccessible to other researchers.
The CSIRO and the ARDC have committed resources to rethinking how clinical research is conducted and managed in Australia. Through a number of workshops and engagements with key stakeholders, we seek to build a research-community-led alliance to develop a roadmap to investigate the feasibility of a trusted infrastructure that provides:
- Increased integrity of research through transparency of data underpinning health research conclusions
- Increased efficiency of research through quicker access to existing studies and avoidance of duplicative research
- Increased findability, accessibility, interoperability and reusability (FAIR) of data
- Increased innovation through new data-driven research built on a long term national data asset designed for re-use, re-purposing, linkage, meta-analysis and machine learning.
An inaugural workshop with key stakeholders in early March has emphasised the following key points:
- There is value and an appetite for a national framework enabling data sharing, however there are currently many challenges in successfully achieving this goal.
- There is a need for systems, data and metadata to be interoperable
- Reproducibility of published results is a live issue internationally
- There is a need to provide best practice infrastructure thereby obtaining best practice in research protocols
- The availability of metadata and processes from previous studies should allow comparison across many studies
To be confirmed