Initiatives

The Health Studies
Australian National
Data Asset (HeSANDA)

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

News and Resources

From the Director: End of year reflection As 2023 ends, Monash Partners would like to thank all we have worked with this year. Your support has ensured… more
2023 MIME Seed Funding results Congratulations to the seven successful project teams in the 2023 Monash Institute of Medical Engineering (MIME) Seed Funding round. A… more
From the Chair: Monash Partners Executive Director role Dear colleagues, On 14 January 2024, after more than 8 years of outstanding service to Monash Partners Academic Health Science Centre,… more
From the Director: Victorian Aboriginal Health, Medical and Wellbeing Research Accord The Victorian Aboriginal Community Controlled Health Organisation (VACCHO), the peak body for Aboriginal and Torres Strait Islander health and wellbeing… more

View all News & Resources