Sharing and requesting access to data from health studies just became easier, with the launch of a new national platform.
Initially focusing on data from clinical trials, Health Data Australia allows clinical trialists and data custodians to share clinical trial data according to standards designed by the Australian clinical trials community and fulfil data-sharing requirements that come with public funding. The platform can subsequently be used by researchers who were not involved in the clinical trials to find and request access to this data.
Health Data Australia was developed through the Health Studies National Data Asset (HeSANDA) program, which aims to stimulate new data-driven research ideas, increase the impact of health research and, ultimately, improve the health and wellbeing of Australians. Researchers stand to unlock the massive potential of the data in understanding health and medical problems. Sharing data also avoids duplicating research, saving time and money.
Health Research Data Without Borders
Health research studies in Australia produce huge amounts of data that contains information about research participants, their health, and their response to the interventions being studied.
Data collected in one study can be extremely valuable to other studies. However, patient privacy requirements and the naturally siloed approaches of research groups and state jurisdictions have made it hard to share data.
In partnership with the health research community, the ARDC played a critical role in synchronising efforts, aligning approaches and building national data capability through the HeSANDA program.
Now, this untapped trove of health research data is set to bring immense value to health research, maximising the return on investment of past research, and laying a foundation for future research to improve health outcomes for Australians.
In her role as the infrastructure manager at the NHMRC Clinical Trials Centre, The University of Sydney, Dr Melina Willson manages the Australian New Zealand Clinical Trials Registry (ANZCTR).
“HeSANDA will have an impact at 3 levels,” said Dr Willson. “Firstly, it is creating new opportunities in health research in Australia and internationally. For example, sharing data enables the pooling of data from multiple trials that can lead to better understanding of the effect of a treatment in certain cohorts of participants that may have been previously unexplored.
“Secondly, it is creating a network of Australian researchers that will be well equipped with the know-how and processes that encourage sharing of data. And lastly, HeSANDA can spur on other countries to develop a similar initiative. This is significant because it would enable better international data sharing and collaboration.”
A Co-Design Approach
The framework for sharing clinical trial data was co-designed by the ARDC and experts and representatives for the initial 9 nodes of the distributed HeSANDA network, which cover 72 health research organisations, health service operators and clinical trial networks from across Australia. More than 90 people took part in working groups, incorporating feedback from research trial participants, consumers, researchers and trial organisers.
“We’re pleased to be establishing consensus amongst a very large and diverse group for the design and approach of HeSANDA,” said the ARDC’s Dr Kristan Kang, Program Manager for HeSANDA.
The co-designed HeSANDA framework would not have been created without the valuable contributions of a wide range of organisations, including:
- Australian Clinical Trials Alliance (ACTA)
- Australian Genomics
- Australian Health Research Alliance
- Australian Institute of Health and Welfare
- Australian New Zealand Clinical Trials Registry
- Australian Research Management Society
- Cochrane Australia
- Consumers Health Forum of Australia
- National Health and Medical Research Council (NHMRC)
- Population Health Research Network
- Research Australia.
Wendy Keech is the Executive Director, Health Translation SA (HTSA), a node of HeSANDA.
“The HTSA Board of Partners is committed to enabling the secondary use of clinical trial data across Australia. HTSA is very pleased to be one of the 9 HeSANDA nodes that are working to implement systems and engage clinical trialists to achieve this vision,” said Ms Keech.
“While there is still a way to go, it is evident that the HeSANDA team has ensured that relevant individuals and organisations across Australia are engaged in this journey together and that the momentum for change is not only building, but the key infrastructure will be in place to enable these changes to be adopted. This project has the potential to accelerate the translation of research into practice, reduce research waste and ultimately improve patient outcomes.”
Standard Practices for Sharing Data
During the design phase, a set of coherent data practices was identified to complement the data management infrastructure (see diagram below). These data practices give the clinical trial data community a common framework for sharing data via HeSANDA.
The data practices cover:
- ethics and consent for data sharing
- data-sharing policies and procedures
- standard metadata to describe clinical trials and the availability of their data.
Keeping Data with its Custodians
The HeSANDA infrastructure is a nationally distributed network of 9 nodes, which launched in mid-2023. The nodes, which comprise 72 organisations, deliver coordinated data services federated at the national level.
The participating organisations have agreed on a common high-level framework for curating and sharing clinical trial data. To adhere to this framework, they have built or modified their policies, systems and procedures.
Resources have been developed for health researchers to support their data management practices, as well as addressing the culture and policy aspects that support this valuable data infrastructure.
While HeSANDA is focusing on sharing clinical trial data, the ARDC is growing its digital research services for the medical and health research community. Our aim is to catalogue and share other types of health and medical data and provide secure data access for clinical trials via the People Research Data Commons.
The HeSANDA Network
There are 9 HeSANDA nodes that represent 72 health research organisations across Australia. They are listed below.
- The University of Melbourne (administering organisation)
- Austin Health
- BioGrid Australia
- Centre for Eye Research Australia
- Murdoch Children’s Research Institute & Royal Children’s Hospital
- Northern Health
- PeterMac Cancer Centre
- St Vincent’s Hospital Melbourne
- The Royal Melbourne Hospital
- Western Health
- Deakin University (administering organisation)
- Australian Early Psychosis Collaborative Consortium
- Barwon Health
- The University of Melbourne
- Monash University (administering organisation)
- Monash Partners
- Australasian Leukaemia and Lymphoma Group (ALLG) (administering organisation)
- Australian & New Zealand Children’s Haematology/Oncology Group (ANZCHOG)
- Australasian Gastro-Intestinal Trials Group (AGITG)
- Australia and New Zealand Sarcoma Association (ANZSA)
- Australia New Zealand Gynaecological Oncology Group (ANZGOG)
- Australian & New Zealand Urogenital and Prostate Cancer Trials Group (ANZUP)
- Breast Cancer Trials
- Cancer Symptom Trials (CST) and Palliative Care Clinical Studies Collaborative (PaCCSC)
- Cooperative Trials Group for Neuro-Oncology (COGNO)
- Melanoma and Skin Cancer Trials (MASC Trials)
- Primary Care Collaborative Cancer Clinical Trial Group (PC4)
- Psycho-oncology Co-operative Research Group (PoCoG)
- Thoracic Oncology Group of Australasia (TOGA)
- Trans-Tasman Radiation Oncology Group (TROG)
- Menzies School of Health Research (administering organisation)
- Charles Darwin University
- Health Translation Queensland (administering organisation)
- Australasian Kidney Trials Network
- Brisbane Diamantina Health Partners
- Cairns and Hinterland Hospital and Health Service
- Central Queensland University
- Children’s Health Queensland Hospital and Health Service
- CSIRO’s Australian e-Health Research Centre
- Griffith University
- James Cook University
- Mackay Hospital and Health Service
- Mater Misericordiae Ltd
- QIMR Berghofer Medical Research Institute
- Queensland Government Department of Health
- Queensland Government Metro North Hospital and Health Services
- The University of Queensland
- Townsville Hospital and Health Service
- Tropical Australian Academic Health Centre Ltd
- University of the Sunshine Coast
- University Southern Queensland
- South Australian Health and Medical Research Institute (SAHMRI) (administering organisation)
- Flinders University
- Health Translation SA
- NHMRC Clinical Trials Centre at The University of Sydney (administering organisation)
- Cardiovascular Centre of Excellence
- Digital Health CRC
- Institute for Musculoskeletal Health
- Institute of Bone and Joint Research
- Sydney Children’s Hospitals Network
- Sydney Health Partners
- Sydney Local Health District
- The Brain and Mind Centre
- University of Sydney
- Westmead Applied Research Centre
- Westmead Institute for Medical Research
- Woolcock Institute for Medical Research
- Curtin University (administering organisation)
- Child and Adolescent Health Service
- Ear Science Institute Australia
- Edith Cowan University
- Government of Western Australia East Metropolitan Health Service
- Government of Western Australia North Metropolitan Health Service
- Government of Western Australia South Metropolitan Health Service
- Harry Perkins Institute of Medical Research
- Institute of Respiratory Health
- Lions Eye Institute
- Murdoch University
- The University of Western Australia
- WA Country Health Service
HeSANDA is continuing as part of the ARDC’s People Research Data Commons, which supports national-scale data infrastructure for health research and research translation.
- Health Data Australia Set to Accelerate Research Through Data Sharing
- Clinical Trial Data Unlocked for Research with New National Platform
- People Research Data Commons Program Consultations Kick Off
- Design Phase Complete for National Health Studies Data Infrastructure
- 9 Nodes Announced for the National Health Studies Data Infrastructure
- Experts Explore Trusted Environments for Health and Medical Research