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Project Members:

Guy Tsafnat (guy.tsafnat@mq.edu.au)

ANDS Contact:

Alan Glixman (alan.glixman@ands.org.au)

Project Status:

In Progress

Macquarie University Hospital Patient Data Collection

Macquarie University

Project Description

Macquarie University Hospital (MUH), opened in 2010, is Australia’s first digital hospital, with systems in place to capture patient clinical data at the time that it is generated. Uniquely amongst Australian Universities, MUH is wholly owned and operated by the University, which allows researchers to directly interact with the Hospital under the same organisational structure. The hospital has thus established a whole of organisation research partnership with the university’s Faculty of Medicine and Health Sciences and the Australian Institute of Health Innovation (AIHI). Through this unique alliance, valuable collections of digital patient and health data that are being routinely generated, and that are of enormous value for health researchers, can now be potentially opened up to the research community. It is likely that in years to come other universities will begin to craft such alliances for data sharing, but as the key hospitals are government run, the governance challenges will see such projects take time to develop. As such, MUH can act as a beacon demonstrator, learning important lessons about the technical and governance challenges of sharing of clinical data, and creating international best practice for others to emulate.

The hospital has accumulated 5 years of rich clinical data covering patient medical history, diagnostic results and treatment outcomes. Today however, in keeping with hospitals across Australia, most of this data is not accessible or available for analysis as it is “trapped” within the hospital systems. AIHI has also acquired other significant collections of health data that are of national importance, including large-scale state wide data for the whole public health system. To bring these collections together for researchers, in 2015, AIHI established a program, which is developing an informatics research platform through which the hospital records and other significant health data can progressively be made available to researchers, together with a suite of analytical tools.

The purpose of this project is to:
• Make an initial tranche of Macquarie University Hospital’s patient data collection available for research on the OMOP common data model and discoverable through Research Data Australia
• Act as a Proof of Concept to guide future clinical data sharing projects
• Establish a comprehensive research data management capability within the AIHI informatics research platform, including technical and data governance models.
• Leverage the strategic research value of the Macquarie University Hospital’s patient data collection, to develop a prototype data collection and access tool.