Guaranteeing privacy, strengthening research
The PHRN-i project will establish infrastructure to provide NSW & ACT researchers with a remotely accessible secure workspace and tools that will enable analysis of de-identified data from a diverse range of health data sources.
In 2008, the Department of Innovation, Industry, Science and Research approved an Investment Plan for Clinical and Population Health Data Linkage Research Capability under NCRIS. The Investment Plan set out a program for a national Population Health Research Network with a National Office in the University of Western Australia and six state and territory nodes. The Sax Institute was appointed as the project participant with responsibility for managing the implementation of the PHRN in NSW and the ACT.
The Sax Institute awarded Intersect a major tender to deliver the NSW node of the Population Health Research Network Infrastructure (PHRN-i). Work on the project is well advanced.
The tender is to “…project manage, plan, design, and broker services, to implement the PHRN-i, including the procurement (under the direction of the Sax Institute) and integration of all software, tools and products”. The PHRN-i project will establish infrastructure to provide NSW & ACT researchers with a remotely accessible secure workspace and tools that will enable analysis of de-identified data from a diverse range of health data sources.
Secure Data Exchange (SDE)
Custodians manage data records at hospitals, health departments and other organisations. Data is shared with researchers once ethical and privacy issues have been satisfied. Data is then transferred securely into the Secure Unified Research Environment.
Secure Unified Research Environment (SURE)
Secure Unified Research Environment (SURE) is a virtual laboratory environment providing researchers with a set of tools to analyse linked health data. Linked health data is held securely within the SURE and is not able to be taken outside the SURE. Researchers are able to access the virtual laboratory via the Web, allowing them to work anywhere and to collaborate with other researchers wherever they may be located. Statistical analysis, interpretation and publications are all undertaken within the Secure Unified Research Environment.
Data records for individual patients from hospitals, health departments and other organisations are combined to provide a more complete picture of health events for research. To protect privacy, data is de-identified. The Centre for Health Record Linkage (CHeReL) facilitates both the linking and de-identification of data.
To gain access to population health data, researchers must submit a research study proposal. Data custodians, service providers and ethics committee members review the proposal.
Protecting the privacy of individuals is critical. Data custodians cannot be confident about releasing data to researchers unless there are adequate measures to prevent the loss of privacy when transferring and storing data. This can make it difficult for researchers to access data they need for their research. The Secure Data Exchange will enable data to be stored and transferred securely so that all users can be confident that the privacy of individuals is being protected.
Researchers face challenges obtaining the information they need to frame their research proposals and to interpret data during analysis. PHRN-i will provide researchers with greater access to the supporting information they need.
Collaboration enhances the sharing and transfer of knowledge and skills between researchers. PHRN-i will provide researchers with a powerful and flexible research work environment that will make it easier for them to collaborate with one another.
PHRN-i will improve communication and facilitate clear workflows between researchers, data custodians, service providers and ethics committee members. This will provide transparency for researchers into the progress and status of their research study proposals, and transparency for data custodians and ethics committee members into the studies being proposed and undertaken.
The project sheet can be found here.