Building national infrastructure to support the sharing and reuse of health research data

Background

A wealth of data is created through health research studies, including information about the people taking part in the research, their health and their response to interventions being studied.

The data collected across studies is valuable for more than just the original piece of research. The data collected in one study can be extremely valuable to other studies. It is essential for guiding clinical practices, informing the design of new studies, and can be utilised in new analyses to generate new research findings. However, issues of patient privacy and the naturally siloed approaches of research groups and government jurisdictions have created barriers to efficient data sharing.

HeSanda is building national infrastructure to allow researchers to access, share and reuse data from health studies, including clinical trials, cohort studies and other data valuable for research. It hopes to bring value to the research community, increase the efficiency of research, and provide benefits for the health of Australia’s population. The ultimate goal is to deliver the infrastructure to enable the creation of a national health data asset.

The program seeks to increase research impact and integrity by supporting activities like new research, meta-analysis, and clinical guideline development.

Overcoming data sharing barriers and tapping into health research data will maximise the return on investment of past research and allow future research to build upon it to improve health outcomes for Australians.

Similar capability has already been established in European health research infrastructure (ECRIN and EOSC Life), and data sharing platforms are emerging in the UK and USA. The Australian Research Data Commons (ARDC) - HeSanda - is playing the critical role in ensuring that Australia is not left behind by partnering with the health research community to synchronise efforts, align approaches and build national data capability.

Health Data Australia

Health Data Australia is a national catalogue of Australian health data designed for researchers who want to discover and request access to data for their research. The catalogue currently contains information about clinical trials datasets collected across Australia by universities, medical research institutes, clinical trials networks, and health services. You can also find information to better understand these datasets, such as study protocols and data dictionaries. The data is held and managed by the organisations responsible for the clinical trials. You can use Health Data Australia to submit a data request to the data owner.

Who's involved

Nine nodes form the current HeSanda network. These are listed below. These 9 nodes confirm a broad national participation covering 72 health research organisations which together represent 18 universities, 10 medical research institutes, 19 health service operators, 16 clinical trial networks and 9 other organisations.

Monash and Partners Node

Monash University and Monash Partners are working collaboratively together to codesign the local node for HeSanda.

We are developing systems and processes to enable the findability and accessibility of clinical trial study data. The Monash and Partners Node is working on a:

• Data repository to securely store high-level descriptive clinical trials information (e.g. study protocol, data dictionary, publications. Not trial data per se) for trials that may be available for data sharing.
• Data request system to review data access requests and allow data sharing.

Our Partners

Our partners include:

• Alfred Health
• Monash Health
• Monash University
• Peninsula Health
• Eastern Health
• Cabrini Health
• Epworth HealthCare
• Burnet Institute
• Hudson Institute
• Baker Heart and Diabetes Institute

Our associate partners include:

• La Trobe University
• Latrobe Regional Hospital

Funding

The Monash and Partners Node of the HeSANDA project received support from the Australian Research Data Commons. The ARDC is funded by the National Collaborative Research Infrastructure Strategy.

Governance

A steering Committee has been established with representation across Monash University and Monash Partners.

Chair		Role	Organisation
David Powell	Director of e-research, Monash University	Steering Committee Chair	Monash
Members		Role	Organisation
Rhys Williams	Research Data Specialist at Australian Research Data Commons (ARDC)	Steering Committee Member	ARDC
Marina Skiba	Clinical Trials and Governance Manager at School of Public Health and Preventive Medicine, Monash University	Steering Committee Member	Monash University
Alison Johnson	Senior Fellow, Data Platform, Monash Partners	Steering Committee Member	Monash Partners
Nikolajs Zeps	Director of Operations, Prostate Cancer Outcomes Registries, Clinical Research Lead, Monash Partners Academic Health Science Centre, Adjunct Professor, Eastern Health Clinical School, Monash University Faculty of Medicine, Nursing and Health Sciences	Steering Committee Member	Monash Partners
Eva Fisch	Open Scholarship and Data Services Lead at Monash University Library	Steering Committee Member	Monash University
Vivianne Andreou	Operations Manager at Monash University	Steering Committee Member	Monash University
Vanessa Fox	Clinical Trial Coordinator at Monash University	Steering Committee Member	Monash University
Jerico Revote	Research DevOps Systems Engineer at Monash University	Ex-officio	Monash University
Mat Ishac	Senior Project Officer at Monash University	Ex-officio	Monash University
Michael Kellett	Project Support Officer, Helix, Monash University	Ex-officio	Monash University

Documents

Health Studies Australian National Data Asset

Health Studies Australian National Data Asset (HeSANDA)

Health Data Australia

Program enquiries

For further information please contact the Monash and Partners Node Manager, vivianne.andreou@monash.edu