What we do

med.data.edu.au underpins research capability for the Australian Health
and Medical research sector.

We enable Health and Medical research by providing state-of-the-art computational infrastructure, in close collaboration with our research partners, which is necessary to address current scientific challenges across human genomics, imaging, personalised medicine, population health, bioinformatics and health informatics.

We:

  • Provide a cost effective and sustainable data storage facility, nationally supported by institutional, state and federal government investment;
  • House and support data that underpins medical research of identified national and international significance;
  • Increase availability of medical research data for reuse and clinical analysis;
  • Provide a foundation architecture upon which projects can port or build services that facilitate controlled access to, use and sharing of health and medical research data in accordance with ethical and privacy constraints;
  • Provide access, storage, high performance compute and analysis, back-ups;
  • Enable mirroring of, access to and linkage to other international datasets of similar interest to facilitate comparative studies;
  • Provide interface and sharing capabilities between academic and clinical researchers;
  • Provide an interface with access and linkage tools that support appropriate privacy and confidentiality requirements of data custodians;
  • Ensure that the data is catalogued and supported with robust metadata regimes.

For Health and Medical researchers in Australia, we offer:

  • Secure storage for research data
  • Data storage that is connected directly to the very-high speed Australian research and education network
  • Data storage that is closely tied to other services like High Performance Computers or Cloud Computing services
  • A place where you can share data and control who you share it with
  • Access to schemes funded by the Federal government where the storage hardware costs are subsidised

For Health and Medical Research Institutions, our facility:

  • Enables extensive collaboration around research data beyond institutional boundaries, both nationally and internationally
  • Lowers the cost of institutional data storage, including the build, scaling out and operations of storage
  • Enables compliance and policy requirements to be met around research data
  • Generates value from sharing research data, by increasing citations, and enabling national and international partnerships around data
  • Fosters participation in the development of a national research data infrastructure that can be used and expanded by all Australian Health and Medical research institutions to meet their data management and computational needs

Why we exist

Both technology and health and medical research policy drivers underpin the need for a national fit-for-purpose health and medical research data storage facility. The NCRIS Research Data Services (RDS) and Research Data Storage Infrastructure (RDSI) projects have recognised the need for task specific, shared infrastructure capacity to store, access, and use health and medical research data.

This is due to:

  • Specific considerations, primarily arising from stringent privacy requirements;
  • Fast growth of the volume of medical research data – driven in particular by data from high resolution and multi-modal imaging, Next Generation Sequencing programs and complementary systems biology “-omics” approaches;
  • Requirement for data management processes that adhere to NHMRC and ARC policies and data management guidelines;
  • Increasing demand for enabling capacity that supports research collaboration both nationally and internationally, through provision of efficient, controlled and secure data access and management regimes;
  • Requirement for coordinated and cost effective deployment of specialist best practice data management capacity.
  • Policy drivers at National, State and Territory Government level, which require that the results of public medical research expenditure are increasingly available for use and translation within the public and private health system.

Operating Principles

Operating principles and function will continue to be developed on advice from the Advisory Board. Primary principles are that:

  • Data custodians wishing to store their data with med.data.edu.au will enter into a service agreement with the node (location) of their choice. In almost all cases it is expected that custodians will choose their local, state, operating node.
  • Data, access and use thereof remains under control of the data custodian at all times.
  • Data should be accessible under controlled and appropriate regimes, determined by ethics provisions, and relevant State, Territory and Commonwealth legislation. Data access and sharing protocols will be developed to support this.
  • Data collections should be catalogued (with appropriate metadata), and discoverable to support further research and analysis. More info here.
  • Our business model will provide cost effective access to high quality shared National Research Infrastructure and expert technical support at significantly reduced costs, supported by National and State Government investments and contributions from the operating node member universities.

Advisory Board

Our Advisory Board comprises representatives from major stakeholder groups.

NSW Health, Office of Health and Medical Research (OHMR):
Dr Antonio Penna (Chair)

Dr Penna is the Director of the NSW Health Office of Health and Medical Research. Prior to this role he was Chief Executive of the Children’s Hospital at Westmead from February 2006 to August 2010 and for one year prior was Executive Director – Medical. During these times he was active in a number of NSW statewide leadership roles and worked collaboratively with other stakeholders across the State. Prior to this he specialised in paediatric pharmacology and undertook clinical research for over a decade.

National Health and Medical Research Council (NHMRC):
Prof Louisa Jorm (Foundation Director of the Centre for Big Data Research in Health at the University of New South Wales).

Prof Jorm is an Australian leader in epidemiological research using linked administrative health data, including hospital inpatient, mortality and Medicare data. From 2007 until November 2014, she was Foundation Professor of Population Health and Director of the Centre for Health Research at the University of Western Sydney, and Principal Scientist and then part-time Senior Advisor at the Sax Institute. Prior to this, she spent more than 15 years in senior positions in public health policy and service roles. She represents the NHMRC on the international Public Health Research Data Forum convened by the Wellcome Trust and chairs the NHMRC’s Data Reference Group. She is a member (appointed by the Minister for Health) of two NHMRC Principal Committees: Research Committee and Prevention and Community Health Committee. She has also been a Member of the Health Expert Working Group, Roadmap for Australian Research Infrastructure (2011 and 2008).

National Health and Medical Research Council (NHMRC):
Adj A/Prof Nik Zeps (University of Western Australia and St John of God Healthcare)

A/Prof Zeps is involved in translational research in breast, gastrointestinal and gynecological malignancies. In 2008 he established a translational research program at St John of God Healthcare which is integrated into clinical care. This work has included establishing a research biobank, a molecular diagnostic service and the provision of laboratory services for clinical trials for a large private metropolitan hospital. He is a member of the NHMRC Research Committee.

Australian Association of Medical Research Institutes (AAMRI):
A/Prof Clara Gaff (Program Leader, Melbourne Genomics Health Alliance)

A/Prof Gaff has been involved in the use of genetics and genomics in health care for almost 20 years through roles in genetic counselling, management of genetic services, health professional education, and strategic development in Australia and the UK. She has worked in public health, government, academic and not-for-profit sectors, and has a PhD in molecular genetics, certification in genetic counselling and postgraduate qualifications in health service research and evaluation. She is a member of the NHMRC Human Genetics Advisory Committee and the Ethics and Social Issues Committee of the Human Genetics Society of Australia.

Department of Health, Victoria:
Dr Andrew Howard

Dr Howard is the Chief Information Officer at the Department of Health, Victoria. Previous roles include community and health ICT consultancy in the private sector, hospital management and hospital based medical practice.

Population Health Research Network (PHRN):
Dr Felicity Flack (Telethon Kids Institute)

Dr Flack is the Manager, Policy and Client Services at the Population Health Research Network (PHRN). Prior to joining the PHRN, Dr Flack was the Manager, Research Governance and Ethics at Sir Charles Gairdner Hospital and the Executive Officer, Division of Clinical Sciences, Telethon Institute for Child Health Research. She has a PhD in Microbiology and an ongoing interest in research ethics

Partners 

We are working collaboratively with groups at the following organisations to analyse requirements and build a national research data infrastructure that can be used and expanded by all Australian Health and Medical research institutions.

We welcome enquiries from other organisations to help them underpin their data-intensive Health and Medical research capability.

Research Organisations:

ANZAC Research Institute
Basil Hetzel Institute
Centre for Cancer Biology
Centre for Eye Research Australia
Flinders University
Hudson Institute for Medical Research
Mater Medical Research Institute
Monash University
Murdoch Children’s Research Institute
Neuroscience Research Australia (NeuRA)
NSW eHealth
Peter MacCallum Cancer Hospital
Prince Charles Hospital
Queensland University of Technology
South Australian Health and Medical Research Institute
The Children’s Hospital at Westmead
The University of Adelaide
The University of Melbourne
The University of New South Wales
The University of Queensland
The University of Sydney
Women’s and Children’s Hospital

We also work with the following National eResearch organisations to ensure that best practice is followed and data management and collaboration tools and computational infrastructure provided by each is integrated with med.data.edu.au:

NeCTAR – National eResearch Collaboration Tools and Resources
ANDS – Australian National Data Service
AARNet – Australia’s Academic and Research Network
AAF – Australian Access Federation

Services Roadmap

The services roadmap for med.data.edu.au across its first funding phase is shown below. Click on the image to enlarge.

Timelinev3

Funding

med.data.edu.au is funded by the Australian Government Department of Education, through the National Collaborative Research Infrastructure Strategy (NCRIS), Research Data Services Project, Research Data Storage Infrastructure project, and the Australian National Data Service.