The primary objective of the PHRN and its Data Linkage Units is to provide approved access to reliable health and health related information for research projects that will benefit the Australian community and are conducted in a way that maximises the protection of people's privacy.

The continued protection of personal information, the preservation and respect of individual privacy and the implementation of a secure data management system are all critical to the success of the PHRN and its operating nodes and data linkage units.

The PHRN has implemented a number of procedures to ensure the best possible privacy and security practices are in place:

  • a range of privacy, security, communication and information management policies;
  • ongoing privacy impact assessments;
  • a legal consultant specialising in privacy issues to advise and guide on policy and practice;
  • consumer representatives to provide advice and training; leading edge technology to ensure information technology, software and data management systems meet the highest security standards;
  • a public website to educate and inform; and
  • an extensive governance and management system in place to ensure accountability.

The PHRN data linkage process is subject to a wide range of legislation and laws aimed at protecting the data used and people's privacy. The work carried out by the PHRN is governed and controlled by a number of legal, contractual, criminal and confidentiality laws and regulations. Due to the national makeup of the PHRN, the linkage units and project participants must satisfy many regulations to ensure safe and secure handling of data.

Data collections used for health research are generally covered by specific legislation. The legislation authorises the collection and use of information in these statutory data collections without the consent of individuals due to the strong public interest and value in the use of the data for the health and well-being of all Australians.

In addition, the PHRN is involved in ongoing consultation with consumer and community representatives so that its management understands and responds effectively to public views and queries.






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Latest Impact Story

In the long run: How data linkage supports clinical trials. When QIMR Berghofer researcher Professor Rachel Neale was studying vitamin D, she knew it had been linked to a host of serious diseases. Professor Neale says linked data—such as hospital records, cancer registers and death records—have been incredibly important for the study.

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Our next Linkage Luminaries webinar will be taking place on Wednesday 23 June at 12noon AEST, 11.30am ACST, 10am AWST with Professor David Preen, Chair in Public Health, UWA School of Population and Global Health. The webinar series aims to showcase some of Australia's leading researchers who have used data linkage in their research.