HeSANDA

HeSANDA – Health Studies Australian National Data Asset

What?

HeSANDA is an initiative of the ARDC (Australian Research Data Commons) to establish a national infrastructure to support the sharing and reuse of sensitive health research data. It will facilitate the FAIR Data Principles (Findable, Accessible, Interoperable and Reusable), with an initial focus on investigator-initiated clinical trials datasets and planned extension to other study types such as clinical registries and cohort studies in late 2023.

Why?

The complexity of clinical trials data governance requires that data custodianship and approval of data requests remain the remit of trial owners. Sharing data ultimately results in better health outcomes for Australians, which is achieved by promoting transparency, encouraging collaboration, accelerating research and knowledge discovery and driving better decision-making. Data sharing also maximises the return on investment from grant schemes, which are often publicly funded.

How?

ARDC consulted with a broad range of stakeholders including researchers, consumers, research institutions and policy makers involved in health research, which identified three development priorities.

1. Coherent Data Practices, to be determined by stakeholders,
2. Coordinated Data Services, to be provided by a network of research organisers.
3. Federated Services, provided by ARDC.

ARDC called for clusters of research organisations to apply to establish a HeSANDA Node, with an initial nine Nodes appointed (and their lead organisations):

HeSANDA Queensland Node (Brisbane Diamantina Health Partners)
MACH Clinical Trials Consortium (University of Melbourne)
Mental Health (Deakin University)
Monash and Partners HeSANDA Node (Monash University)
National Cancer Cooperative Trials Groups (Australasian Leukaemia and Lymphoma Group)
Northern Australian Node (Menzies School of Allied Health)
SA HeSANDA Node (Health Translation SA)
Sydney Health Partners (NHMRC Clinical Trials Centre)
WA HeSANDA Node (Curtin University)

The WA HeSANDA Node

Our Node partner is the WA Health Translation Network (WAHTN) and includes partner organisations:

Child and Adolescent Health Service
Ear Science Institute Australia
East Metropolitan Health Service
Edith Cowan University
Harry Perkins Institute of Medical Research
Institute of Respiratory Health
Lions Eye Institute
Murdoch University
North Metropolitan Health Service
South Metropolitan Health Service
The University of Western Australia
WA Country Health Service

We Are Working Together To:

Engage with the WA research community to promote HeSANDA.
Develop local policies and procedures to curate contributions to the central catalogue.
Establish a governance framework to facilitate data sharing between data custodians and other researchers.
Contribute to testing the national infrastructure, using investigator-initiated clinical trials as a demonstration model.

How Can You Contribute?

If you are a Principal Investigator who is interested in learning more about sharing your clinical trial data, please contact us via email HeSANDA-WA@curtin.edu.au or call Julia Fallon-Ferguson, Executive Officer CTEP-WA on 08 9266 3067.

The Work Plan

The Design Phase: July – December 2021
Representatives from each Node participated in four working groups established by the ARDC:

Information Design
Data Access
Ethics & Consent
Technology

Each working group met for 90 minutes every two weeks.

The Development Phase: January – December 2022
Each Node have been developing processes that will enable them to contribute to metadata from clinical trials conforming to a nationally agreed format. The outcome will be a coordinated data service supplying the federated central catalogue.

The Test Phase: January – June 2023
The Nodes will test and deploy the federated service that operates the centralised catalogue and deliver a set of infrastructure governance policies and procedures.

Funding

The WA Node of the HeSANDA project received funding from the ARDC, who are funded by the National Collaborative Research Infrastructure Strategy (NCRIS).