Research projects that involve sharing sensitive data between researchers are challenging. Yet for collaborative projects, sharing sensitive data in a trusted and governable way is essential to answer complex questions across institutions and countries.
To tackle this considerable challenge, Monash University and partners established the Secure eResearch Platform Project, a national collaboration to deliver a secure, trusted and scalable environment for data governance and secure remote data analysis environments.
The Secure eResearch Platform Project addresses the requirements of both data custodians, who are responsible for collecting and managing sensitive research data, and research users, who access sensitive data to address research questions. Data Custodians require a robust, accredited, regulated and functional environment for the governance, control and management of sensitive data. This is critical to enable data curation, linkage, extraction, sharing with access control, de-identification and analysis.
Dr Adrian Burton, Director, People Research Data Commons, ARDC, said, “In health research, both data custodians and data users are committed to preserving the privacy of research subjects. And nobody wants to betray the trust of the public with a data breach nor face the legal ramifications. So ad hoc or cottage industry approaches to handling people’s data don’t cut it. The Secure eResearch Platform project delivers technology that allows researchers to improve patient lives through research but at the same time meet their important expectations of privacy.”
Sensitive Data to Improve Health and the Environment in Informal Settlements
One project using the Secure eResearch Platform is the Revitalising Informal Settlements and their Environments (RISE) project. With the goal of delivering sustainable health and environmental improvements for more than one billion people living in informal settlements, RISE is an interdisciplinary action research program involving more than 150 researchers and practitioners from diverse backgrounds across Australia, Fiji, Indonesia and Aotearoa New Zealand.
The Secure eResearch Platform enables RISE to securely share sensitive health data, enabling researchers to gain new insights without jeopardising patient confidentiality.
Dr Fiona Barker from Monash University is the Data Manager and Chief Investigator for RISE. Dr Barker said, “The program faces a variety of challenges related to data sharing, including capture of sensitive data from vulnerable populations, potential reidentification risks and difficulties arising from the geographical spread of RISE researchers across more than four countries.”
“The SeRP platform plays a pivotal role in supporting RISE’s commitment to FAIR data principles,” said Dr Barker. “Its secure environment, combined with access to computational power and analytical tools, enables researchers to access sensitive data while adhering to ethical requirements. Central storage and curation of datasets within SeRP mitigates risks related to version control, and governance controls ensure that data custodians have appropriate oversight of data use, analyses and publications.
“The SeRP platform also plays a crucial role in achieving RISE’s long-term data sharing objectives, providing us with invaluable opportunities for collaborative data analysis during this critical phase of the research program.”
Sensitive Patient Data Safe with Secure eResearch Platform
Another project using Secure eResearch Platform is PRAISE, a study that is using clinical registry data to predict fracture outcomes using artificial intelligence (AI) to inform treatment. The study uses a large volume of sensitive patient data and state-of-the-art AI models.
Dr Joanna Dipnall and Prof. Belinda Gabbe from Monash University are part of the PRAISE research team. “SeRP has ensured both the ethics and governance for this study is met. Transferring thousands of patient radiology images from three PRAISE hospital sites has been challenging due to the varying computing capacities at each hospital site. However, the PRAISE and SeRP teams have worked together to implement a number of methods to guarantee the safe transfer of data into SeRP,” they said.
“Without the expertise and responsiveness of the SeRP team the PRAISE project would not have been able to transfer the imaging and commence the AI modelling.”
Secure Platform for Sharing Dementia Data Takes Ageing Research Global
Dementias Platform Australia (DPAU) gives Australian researchers access to data from dementia studies carried out in Australia and overseas, enabling new insights into ageing, age-related diseases and risk of Alzheimer’s disease and other dementias. The platform was developed by a new international collaboration of UNSW Sydney’s Centre for Healthy Brain Ageing (CHeBA) and Dementias Platform UK.
Underpinning DPAU is the Secure eResearch Platform, which supports the secure sharing of sensitive health data at an international scale.
Dr Vibeke Catts, project leader of DPAU at UNSW Sydney, said, “Secure eResearch Platform is a trusted environment and an optimal solution for the DPAU data-sharing platform. DPAU has benefited from the existing Secure eResearch Platform instance at Monash University, which is supported by a highly professional team.”
Learn more about DPAU’s use of Secure eResearch Platform.
The ARDC is continuing to address the health and medical data challenges associated with secure data access, data integration and advanced analysis through the People Research Data Commons.
Through the Secure eResearch Platform project, QCIF developed a secure data analysis environment for research, KeyPoint. KeyPoint is available to researchers at QCIF member universities.
For more information and to learn how to access the platforms, visit Sensitive Data Platforms.
Access to the Secure eResearch Platform technology hosted at Monash University is supported by ARDC co-investment via the National Collaborative Research Infrastructure Strategy (NCRIS) (doi.org/10.47486/PL058). It is led by Monash University and involves 5 other Australian universities.