Health Studies Australian National Data Asset & Health Data Australia
Reusing data to accelerate research for better health outcomes
HeSANDA is a national initiative of the Australian Research Data Commons (ARDC) and is supported by National Collaborative Research Infrastructure Strategy (NCRIS). It is a collaboration of 9 HeSANDA nodes that represent over 70 health research organisations across Australia. The Melbourne Academic Centre for Health (MACH) node is led by the Methods and Implementation Support for Clinical and Health Research (MISCH) Hub at University of Melbourne.
The Health Studies Australian National Data Asset (HeSANDA) is a national program that makes health and medical research data easier to find. It facilitates access, sharing and reuse of research data, resulting in a reduction in research waste, improvements in researcher collaboration, and an opportunity to answer new research questions. It aims to support more efficient and effective research to help improve health outcomes.
The research community across Australia has been working together through HeSANDA to develop Health Data Australia, a catalogue for health and medical researchers to register a description of their research so it’s easy to discover. A federated structure of partners across Australia then links researchers and facilitates data sharing and data access. This is possible through the searchable online catalogue and a secure access request portal.
Importantly, the researchers who created the data always maintain control over their data and determine with whom it is shared.
In Phase 1, HeSANDA focussed on investigator-initiated and academic clinical trials. Phase 2 (2023-2028) will provide opportunities to consolidate capability for clinical trials, extend the approach to other health study types, and deploy new capabilities such as secure access environments.
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The Australian Research Data Commons (ARDC) has developed the HeSANDA program to build national infrastructure to support the sharing and reuse of health research data. This will bring value to the research community, increase the efficiency of research, and ultimately provide benefits for the health of Australia’s population. The program seeks to increase research impact and integrity by supporting activities such as new research, individual participant data (IPD), meta-analysis, and clinical guideline development.
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MACH Node Technical Infrastructure
At all stages the primary researcher or data custodian will maintain ownership of all research outputs. To register your clinical trial dataset in the Health Data Australia catalogue, you will be required to provide a description of your clinical trial dataset - otherwise known as metadata. This description, the metadata does not contain any identifiable or sensitive clinical trial data. The individual participant level data (IPD) is always held by the primary researcher or data custodian.
The clinical trial metadata registration happens in 2 steps. The first step is to ensure that your trial is registered and up to date in ANZCTR and Section 11. data sharing statement is current. The second step is to complete the additional clinical trial dataset description (metadata) form via REDCap here (approx. 5-10mins). The REDCap form will feed metadata into figshare and a DOI (Digital Object Identifier) will be created.
The combined records (ANZCTR & the trial dataset description) will then be harvested into the Health Data Australia platform within 72 hours.
Why use the MACH node to register your clinical trial dataset description?
- Secure – REDCap and figshare are secure applications which feeds metadata into Health Data Australia.
- Identifiable – Figshare mints a DOI for each published metadata record.
- Discoverable – As a unique identifier the DOI is captured by major research repositories and libraries globally.
- Controllable – Researchers always maintain control over their research data sets and Individual Participant Data (IPD), only sharing the metadata through the catalogue. Researchers can control and approve requests for access to their datasets once your individual governance requirements are met.
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Ready to register your clinical trial in Health Data Australia?
Contribute to the Health Data Australia catalogue in 2 steps:
1. Ensure your clinical trial is registered in ANZCTR and Section 11. data sharing statement is current.
2. Access the MACH registration portal to register your clinical trial metadata here (5-10mins).
Tip: Dataset Description is a description containing easily read and understood information about the dataset, not the trial itself – this information is captured in ANZCTR. The purpose is to enable users not involved in the original study to find and evaluate the applicability of a dataset for their research question.
Example dataset description:
This dataset includes 384 participants (from 18 years old, 190 males / 194 females) receiving in-centre or home-based hemodialysis or peritoneal dialysis recruited into the EXEMPLAR study from six local health districts in the Greater Sydney region, New South Wales, Australia. Baseline data includes demographics, dialysis history, cognitive status, health literacy and self-efficacy scores. Follow-up data were collected at 3, 6 and 12 months and includes patient reported outcomes (quality of life, knowledge, confidence, health behaviour and self-management) and clinical outcomes (symptom burden (Palliative care Outcome Scale) and nutritional status (Patient-generated Subjective Global Assessment). The file type is .XLS.
After steps 1 & 2 are complete
- The REDCap form will feed metadata into figshare and a DOI (Digital Object Identifier) will be created.
- The combined records (ANZCTR & the trial dataset description) will be harvested into the Health Data Australia platform within 72 hours.
- Search the Health Data Australia platform to browse other clinical trial metadata and request access to datasets via the platform.
Registration Resources
- Data Provider, Data Requestor Responsibilities & Guidelines
- Dataset Provider Instructions - Register your clinical trial dataset in 2 steps
For queries contact hesanda-mach@unimelb.edu.au
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MACH node specific guidelines
The MACH HeSANDA node responsibilities and guidelines document is intended to be used as guidance for data providers and data requestors in the use and context of the Health Data Australia (HDA) portal to facilitate the secondary use of clinical trial data.
Use these guidelines to contribute to the Health Studies Australian National Data Asset and register your clinical trial dataset on Health Data Australia.
Additional Resources
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Who manages the MACH node?
The MACH node is administered by the University of Melbourne MISCH Hub and received investment (https://doi.org/10.47486/HS009) from the ARDC. The ARDC is funded by the National Collaborative Research Infrastructure Strategy (NCRIS).
A project steering committee and management committee has been established to provide oversight. The membership of these committees is listed below.
Management Committee
Prof Andrew Davidson (Chair)
Prof Jon Emery
Prof Julie Simpson
A/Prof Adam Deane
Prof David Story
A/Prof Lyndell Lim
Prof Mark Rosenthal
A/Prof Johannes Kern
Dr Megan Robertson
Mr Bill Karanatsios
Dr Heidi Gaulke
Ms Michelle Iddles (Secretariat)
Steering Committee
Prof Julie Simpson (Chair)
Luke Stevens
Prof Dougie Boyle
Ms Katie Ozdowska (Secretariat)
Ms Michelle Iddles
ARDC rep
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Keep up to date with news and events related to HeSANDA
National Health Data Australia Launch - July 2023
On 18th July 2023, Health Data Australia was launched nationally. Watch the HeSANDA program showcase and launch of the Health Data Australia platform here
Advancing Health Research through Data Sharing - October 2023
Held on October 25th 2023, the national research symposium titled Advancing Health Research through Data Sharing was held in Sydney as part of a node wide cross collaboration. Listen to experts on topics such as FAIR data sharing principles, the future of secondary research and health outcomes, followed by a demonstration of the Health Data Australia platform and panel discussion, you can watch the event here
HeSANDA and Health Data Australia at the A-CTEC conference - May 2024
The national A-CTEC conference was held in Melbourne on the 11th May 2024, with 2 days of thought-provoking panels, discussions, innovative debates and insightful presentations. The HeSANDA initiative and Health Data Australia was presented by MACH HeSANDA project manager Katie Ozdowska.
Unlocking the Potential of Secondary Data - June 2024
In June 2024, the ARDC hosted an online webinar with case studies highlighting how researchers re-use clinical trial data for 4 types of secondary research: evidence synthesis, secondary analysis, validation, and education. Find out more - read the article and access the recording here.
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View the MACH HeSANDA figshare catalogue of contributed clinical trials from our partners here
Benefits of data sharing
Part 1 of a 4-part series discusses the benefits of data sharing and secondary data use though the Health Data Australia platform.
What is Health Data Australia?
Part 2 of a 4-part series discusses what the HeSANDA initiative is and what the Health Data Australia platform can offer your research.
How to set up your clinical trial up for data sharing
Part 3 of a 4-part series walks through the process of sharing clinical trial data using the Health Data Australia platform.
Why is metadata important for research?
Part 4 of a 4-part series discusses the importance of metadata in health and medical research.
Contact MACH HeSANDA node
If you are interested in learning more about contributing your clinical trial metadata with Health Data Australia or sharing your clinical trial data, please contact the MACH node team directly: hesanda-mach@unimelb.edu.au