About the People Research Data Commons
The ARDC People Research Data Commons (People RDC) is delivering national scale data infrastructure for health research and translation.
Researchers, innovators and policymakers seek to improve health outcomes for society, and yet the data and digital platforms they need span multiple layers of government, health service operations, health research studies, institutes, facilities and the private sector. The People RDC initiative develops, operates and coordinates national-scale capabilities to support digital health research and translation.
Addressing National Data Challenges
Health research has a rich data ecosystem with national data assets distributed across the government, research and health service sectors. The challenge for potential users of these national data assets, like researchers or industry members, is identifying what data is available, where it is located and how it can be accessed. Additionally, there is a need for national research infrastructure to play a role in the strategy, provision and continuity of access of national scale data assets for health and medical research.
For example, to dynamically update dietary guidelines on stroke management, we want to be sure we have the data we need, that it is governed and standardised for re-use, and that we can find it and request permission to use it.
Data custodians and their organisations typically operate bespoke secure environments that enable researchers, collaborators and data requesters to analyse data, but they also lead to data silos that constrain national scale cross-sector, cross-jurisdiction multidisciplinary data collaborations. To ensure that data remains protected and under the full control of the data custodian at all times, it is vital to improve interoperability across secure data analysis platforms and incorporate privacy-preserving technical interoperability and seamless data governance.
For example, to transform our understanding of ageing by bringing together scores of longitudinal studies of brain ageing and dementia, we want to know how to give researchers secure access, and what systems and processes need to be in place to respect the privacy of the study participants.
Australia has world-leading, NCRIS-funded data linkage capabilities which enable a wide range of health data to be linked within and across jurisdictions. To meet research demand, it is essential to accelerate and scale up data integration capabilities nationally while ensuring the highest standards of privacy and security.
For example, to improve outcomes for people who suffer traumatic injuries in car accidents, we want to integrate data from the trauma registry, car accident insurance claims, accident and emergency hospital records, ambulance records, research studies and the deaths registry. We need to consider any existing standardisation of data structures across these sources, whether common medical concept definitions are in place, and whether there are common identifiers.
Facilitating the application of advanced analytics techniques like machine learning – in the context of national sensitive data collections managed across disparate institutional secure data repositories – raises challenges around data heterogeneity, quality and integration which will require frontier solutions.
For example, to support diagnostics and improve survival of cancer patients, we want to consider how nationally distributed machine learning over cancer data and imagery can be established. We want the images to remain securely within clinics and yet provide parameters to a model that is supported by data and coding standards and a well curated reference dataset.
Many of the data challenges in health research arise from the sensitive nature of health data and jurisdictional and regulatory requirements that lead to a heterogenous digital infrastructure ecosystem. The ability to deliver consistent practices, technical interoperability and common standards across this diversity will be a defining feature of the People RDC.
Explore the programs and projects we lead under the People RDC:
Health Studies Australian National Data Asset (HeSANDA)
The ARDC is taking a co-design approach to implementing infrastructure in partnership with stakeholders from all parts of the health system. As a:
We have been supporting world-class health and medical research with real-world impact. Read case studies of some of our efforts, on which we are building the People RDC:
Unlocking the Potential of Clinical Trial Data
Blood Transfusions and Patient Outcomes – a New National Dataset
Secure Data Analytics Platform, ERICA, Brings Better Health Outcomes
Resources for Researchers
The People RDC builds on the ARDC’s experience working in partnerships to deliver digital research infrastructure for health and medical researchers, which has culminated in a wide range of datasets, free tools and upskilling materials. Explore these resources.