Developing a proposal for enabling the creation of health data collections and a federated secure platform for research collaborations over these collections of sensitive data.

Australia continues to make significant investments in health research with a focus on (i) driving the translation of health and medical research into clinical practice, policy and health systems and the effective commercialisation of research discoveries, (ii) supporting the pursuit of an Australian health system that is research-led, evidence-based, efficient and sustainable, and (iii) maintaining a strong integrity framework for research and guideline development, (iv) underpinning rigorous and ethical research and relevant and accurate guidelines, and (v) promoting community trust.

Universities have long-standing commitments to health research and the translation of this research to deliver health care improvements and better health outcomes for the community. These institutions are well placed to underpin high quality research initiatives in partnership with health care services and governments; and supported by world-class research infrastructure and best practice methodologies.

In this landscape, the key questions that need to be addressed are:

  • How can collections of sensitive data be made available through fully governed and secure environments?
  • How can the university, government and health care service sectors collaborate effectively and securely to create collections that enable the secondary use of health data on a national scale?
  • How can health researchers get access to a secure national ecosystem that ensures the management and provenance of sensitive health data and also enables sustainable and scalable collaborations over sensitive data within secure environments?

This project will initiate a discussion about the possibility of leveraging the Secure eResearch Platform developed at Swansea University (UK) to develop a federated/confederated national secure research ecosystem.

Start date 3 June 2019
Expected completion date 21 October 2019
Investment by ARDC $49,999
Co-investment partners
Lead node
1 National workshop
A national workshop with participants from all 3 sectors (universities, governments and health care services) to develop a consensus on the core principles of the national secure research ecosystem.
2 Roadmap
A roadmap outlining a phased approach to implementing the core principles and key milestones
3 Completion of project
Project outcomes will be presented at an ARDC Data and Services Summit in October 2019.

Core features

National workshop
A national workshop with participants from all 3 sectors (universities, governments and health care services) to develop a consensus on the core principles of the national secure research ecosystem.
Roadmap
The roadmap will enable or enhance: - Research practice, data governance and methodologies for sensitive data - Technical infrastructure to underpin data management, collaboration and informatics on health data - Frameworks to develop, share and link FAIR data collections from the government, research and health care sectors to harness the transformative power of data and accelerate advances

Who is this project for?

  • Researchers
  • Data infrastructure service providers
  • Health care providers
  • Funding bodies and policy makers from the health research and service domains

What does this project enable?

The roadmap will enable or enhance:

  • Research practice, data governance and methodologies for sensitive data
  • Technical infrastructure to underpin data management, collaboration and informatics on health data
  • Frameworks to develop, share and link FAIR data collections from the government, research and health care sectors to harness the transformative power of data and accelerate advances

Handy resources

Monash UniversityVisit