What is RADiANT?
RADiANT is a new Australian and New Zealand researcher-led and researcher-focussed scientific network established to promote policy that supports good practice in the access to and use of real-world data for research.
The Network was initiated in response to the findings and recommendations of the Australian Government Productivity Commission into Data Availability and Use (March 2017: http://www.pc.gov.au/inquiries/completed/data-access/report). It is partially modelled on, and partners with, the Pan-Canadian Real-world Health Data Network (PRHDN).
Australia and New Zealand’s world-class data holdings have enabled internationally recognised research and vital policy and practice change. But we are at a crossroads in terms of national policy reforms for data governance and data infrastructure, with major ramifications for the future of real-world data science. It is imperative that Australian and New Zealand researchers have a forum through which they can engage with the National Data Commissioner and contribute to the design of the national data sharing and release framework, the trusted user framework, and the high-value dataset framework, in the first instance. Related initiatives include the framework for the secondary use of My Health Record.
What will it do?
The Network will
- Provide a trusted forum for efficient and coordinated expert technical input on real-world data policy reforms and related data initiatives
- Engage with stakeholders on behalf of researchers as a whole, for the common good
- Provide advice that maximises the efficiency, timeliness and innovation of research using real-world data holdings
- Provide a forum for knowledge creation and exchange within and across scientific disciplines that use real-world data
What does it look like?
The Network is open to individuals undertaking research using real-world data. Members must be committed to strong research leadership and be willing to contribute to working groups and tasks. The Network will be established for a 3-year term, at which time the objectives will be reassessed. The membership will develop the terms of reference. The Network will facilitate and promote renewal and opportunities for early career researchers. Membership is free; the Network will initially be hosted and supported by the University of New South Wales.
Our Patron - Professor Fiona Stanley AC
The RADiANT patron is Professor Fiona Stanley AC, a distinguished Australian scientist who has pioneered secure access to real-world health data for research. “Australian researchers have demonstrated that the use of total population data, linked together, can have significant public benefit. However, we have barely scratched the surface of what we can now do. Given the exciting national changes to opening and using data sets, RADiANT will enable Australia’s considerable expertise in data linkage and analysis to be used across the Federation, to influence innovation and improve services, and to enhance their cost-effectiveness.”
What is real-world data?
Real-world data is variously defined. In this context it is data generated and collected when people interact with services or products, and includes for example electronic medical records, insurance claims, school enrolment and attainment data, records of social security benefits and data created through use of social media or wearable technologies. There is growing recognition of the utility and value of real-world data for research, because traditional trials, experiments and surveys may not generalise to real-life settings, and are slow and expensive to conduct.