Privacy Protecting Model
Operating under the lawful release of data for research and analysis through the Privacy Act, 1988 (Cth) or other legislation, SA NT DataLink provides a statistical data linkage service to enable third party researchers and analysts to be approved to access and use de-identified data from multiple data sources. The privacy protecting model's foundation is information security which maintains confidentiality, and provides ethically approved researchers safe and secure access to specifically approved data.
Instead of researchers having access to individual's personal details, the strict adherance to the separation principle by SA NT DataLink increases privacy protection and confidentiality of researchable data.
SA NT DataLink have a short YouTube video explaining a project using the privacy protecting model, explaining the privacy protecting Separation Principle.
Please refer to SA NT DataLink's committment to Privacy and Security.
The Separation Principle
SA NT DataLink use the Separation Principle that was pioneered in the 1980s by Michael Hobbs. Prof. Hobbs returned to the University of Western Australia from Oxford, and worked with Prof. Fiona Stanley from the Telethon Institute for Child Research and the WA Dept of Health on significant data linkage projects.
This principle restricts the use of identified data for the creating of privacy protecting project specific linkage keys that enables each of the Data Custodians to release anonymised data to the Researcher. As illustrated in the diagram below, only the Data Custodian has access to both the Personal Identifiers and the Content Data, SA NT DataLink only has access to the Personal Identifiers with the the Researcher using the de-identified data for their research study.
The following two seminal journal articles describe the Western Australian pioneered 'privacy preserving' data linkage system:
“Research use of linked health data - a best practice protocol” Aust N Z J Public Health 2002;26(3):251-5.
“Population-based linkage of health records in Western Australia: development of a health services research linked database.” Aust N Z J Public Health. 1999 Oct;23(5):453-9
SA NT DataLink developed it's privacy protection protocols and processes in cooperation with the Privacy Committee of South Australia and the Northern Territory Information (Privacy) Commissioner.
Independent Ethical Review and approval is mandated for each third party research study. Ethical approval provides the legal approval for data linkage projects. It is best practice for independent approval of access and use of people's data for research.
Ethical approval is conducted in accordance with Section 95 of the Privacy Act, 1988 (Cth), where an NHMRC accredited Human Research Ethics Committees has legal authority and responsibility to assess and approve the access and use of people's personal information for research. SA NT DataLink support the de-identification of data for approved use.
For more information on ethics please refer to National Health and Medical Research Council (NHMRC).
For more information on SA NT DataLink's Information Security practices please refer to Overview - Security Manual