Data registries managed by two major organisations and hosting more than 1.5 million de-identified patient records in the fields of intensive care and cardiac surgery will now be more easily accessible to researchers via the Sax Institute’s Secure Unified Research Environment – SURE.
The Australian and New Zealand Intensive Care Society’s Centre for Outcome and Resource Evaluation (ANZICS CORE) and Monash University through its custodianship of the Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) National Database, have joined with SURE to set up work spaces that will allow researchers to access their data registries for linked data studies without compromising information security.
ANZICS CORE runs four registries covering Intensive Care practices in Australia and New Zealand and contains over 1.5 million individual patient records dating back to 1992. The registries collect data from 80% of intensive care units (ICUs) with data from 97% of all tertiary units.
“Big Data is Big Risk and we have to protect it” – Dr Lavinia Tran
The ANZSCTS National Cardiac Surgery Database Program, based at Monash University at Melbourne’s Alfred Centre, will also make its database available via SURE. The database, in operation since 2001, is currently the only compilation of cardiac surgical procedures and outcomes in Australia and contains more than 85,000 records from 19 of Victoria’s 25 public hospitals and eight private hospitals across the country. It includes information such as type of surgery performed, complications and other details relating to cardiac surgery risk and outcomes.
“We encourage the secondary use of registry data,” ANZICS Core Manager Sue Huckson said.
“The collaboration with SURE makes data more available and provides both ANZICS CORE and external researchers opportunities to undertake data linkage projects within a secure environment. Data security is a high priority for ANZICS CORE, SURE provides a greater level of rigour around what we do.”
SURE was purpose-built by the Sax Institute as Australia’s only remote-access data research laboratory for analysing routinely collected sensitive human research data. It allows researchers to collaborate from anywhere in Australia or the world on linked data projects and researchers in multiple states and territories as well as Scotland and the Netherlands have already benefited from its ability to cross borders.
It works by establishing a virtual desktop on each individual researcher’s computer where they can access and analyse large datasets quickly using cutting-edge analytic tools. But the data is never stored on their personal computer. The virtual desktops they use run on hardware physically located at and managed by SURE using a series of highly secure processes that mean original datasets never leave the facility for the duration of the research project.
It is these security benefits that have raised the interest of data custodians, including the Australian Institute of Health and Welfare, which now requires researchers to use SURE in order to access linked Commonwealth data such as Medicare and Pharmaceutical Benefits Scheme data.
The Sax Institute has recently doubled SURE’s capacity by establishing a second site, which will enable more research projects to be carried out in the facility.
Manager of the ANZSCTS National Cardiac Surgery Database Program, Dr Lavinia Tran, said an increase in the number of requests from researchers wanting to use the database had prompted it to investigate using SURE.
“Being able to make our data available securely was what drew us to SURE,” Dr Tran said.
“Big Data is Big Risk and we have to protect it. But this will mean researchers external to Monash can access the data in a secure environment.”
- SURE is funded as part of the Population Health Research Network, an initiative of the Australian Government being conducted as part of the National Collaborative Research Infrastructure Strategy.