HeSANDA Clinical Trials
Building national infrastructure for clinical trials data sharing and collaboration
Who will benefit
Australia’s health research and clinician community
The Challenge
Enabling access and reuse of clinical trials data allows for better insights about the effectiveness of health interventions and therapies, which allows for health guidelines and treatments to be improved as exemplified by the collaborative response to the COVID-19 pandemic.
While the potential benefits are significant, as is the case with most health data, the sharing and reuse of clinical trials data are limited by the diverse approaches to data governance and management used by trials in Australia.
The Response
The Health Studies Australian National Data Asset (HeSANDA) program is building national infrastructure to allow researchers to access and share data from health studies, including clinical trials, cohort studies and other data valuable for research.
Our HeSANDA Clinical Trials projects focus on enabling researchers to share and find investigator-initiated and academic clinical trial data. The projects are delivered in partnership with the Australian clinical trials community, which is working together to develop and implement national data standards.
The major output from the partnership is Health Data Australia – a new online portal to help researchers access that data.
How was HeSANDA Clinical Trials established?
Extensive consultation with the research community and key stakeholders identified priorities, requirements, and guiding principles for a new national research infrastructure.
The first consultations were completed in August 2020, and the outcomes of these consultations are detailed in the Development Priorities Consultation Report. These set the direction of the asset based on the data development principles.
A second round of consultations were held with key stakeholders: clinical trialists, research participants, and health consumers. These workshops validated and refined HeSANDA’s approach. The outcomes are detailed in the Stakeholder Consultation Report.
Based on these consultations, we established partnerships with research institutions, organisations and other stakeholders involved in clinical trials research around Australia. These partnerships established the 9 HeSANDA nodes, which represent 72 research organisations across Australia.
We work together to build national capability in the 3 key areas:
As part of the People Research Data Commons, the second stage of the HeSANDA Clinical Trials partnership involves transitioning the HeSANDA infrastructure into its operational phase.
The People Research Data Commons is also establishing projects to extend the clinical trials data approach to other health study types, such as cohort studies, and deploy new capabilities such as secure access environments.
Outcomes
The key outcome from the project is 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 data access request portal.
Importantly, the researchers who created the data always maintain control over their data and determine with whom it is shared.
Other outcomes of this project include:
- guidance for clinical trial data sharing policies and agreements
- a participant consent form for data sharing (produced in partnership with the CT:IQ Informed project)
- a national metadata standard for clinical trials data discovery
- a range of skills resources and other guides to support clinical trials data sharing.
Expected outcomes of the second stage
The expected outcomes from the second phase of the HeSANDA Clinical Trials partnership include:
- improving the quality, scalability and sustainability of Nodes’ local infrastructure (including policies, procedures, and systems)
- increasing the buy-in and uptake of HeSANDA Node infrastructure from partner organisations and clinical trials
- aligning and coordinating activity across the HeSANDA Node network as a whole.
Value of HeSANDA and Health Data Australia
Overall, this activity increases Australia’s return on investment in health and medical research by enabling researchers to reuse existing data to inform new research questions and initiate new research collaborations. This will accelerate research answers and extend the value of consumer/participant contributions in a systematic and meaningful way.
Here is the value of HeSANDA and Health Data Australia for health researchers, the research ecosystem and the community:
The Partners
The ARDC has established a network of 9 infrastructure nodes representing 72 research organisations, covering the majority of Australia’s states, territories, and health researchers. These organisations are working together to deliver coherent data practices and coordinated data services at a national scale.
The HeSANDA nodes are:
- 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
- Orygen
- 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)
- AARNet
- 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
- QCIF
- Queensland Government Department of Health
- Queensland Government Metro North Hospital and Health Services
- QUT
- 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
- The Matilda 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
- WA Health Translation Network
Read the HeSANDA flyer
Learn more about HeSANDA, its value, how it works and the HeSANDA network from this flyer.
Timeframe
June 2020 to June 2026
Current Phase
In progress
Project lead
Kristan Kang, ARDC
Categories
Research Topic
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