Population Health Research Net

What is the Population Health Research Network (PHRN) and what do you do?

The PHRN is working to establish Australia's first national data linkage network. Our role is to build the infrastructure to safely and securely link approved health and health related data within and across jurisdictions and sectors. The PHRN is also working to provide researchers and other data users with the information and training they may need to help them correctly apply for and access approved data for linkage purposes. The PHRN data linkage units do not conduct their own health or health related research. Read more

Who funds PHRN?

The PHRN has received a $20 million allocation from the Australian Government's National Collaborative Research Infrastructure Strategy (NCRIS) program. A further $10 million for the PHRN was allocated in May 2009 from the Education Investment Fund Super Science Initiative. In addition, state and territory governments and academic partners are contributing $32 million in cash and in-kind contributions to the PHRN. Read more

Who is accountable for the PHRN?

The PHRN is governed by a Management Council that oversees the implementation of the national data linkage program in accordance with the NCRIS Investment Plan. The PHRN Management Council comprises a PHRN nominee from each state/territory data linkage unit or node, a nominee of the Australian Government's Department of Health and Ageing, The University of Western Australia (the Funding Agreement manager), the PHRN Centre for Data Linkage, two researchers demonstrating expertise in the field of data linkage and a soon-to-be appointed health consumer representative. Read more

What is data linkage?

Data linkage is, in simple terms, a way to bring together information about people, places and events, and making it available for research purposes. It is commonly used for population-based health research and utilises routinely collected health information. Using specially developed technology the PHRN will be linking information from different data collections across the country to provide approved researchers with information to enable the study of health trends and health needs across Australia. Read more

What kind of data do you use?

Throughout our lives information is routinely collected about us by government departments and other community-based agencies. Many of our life experiences from the moment we are born until our death generate data that is collected and used for research purposes. When you visit a hospital, when you get married or divorced or when you have children, information is routinely collected via departments and agencies such as public hospitals, and the Registrar of Births, Deaths and Marriages. Examples of these data collections include Hospital Admissions collections, Birth and Death registries, Midwives registries, and Disease registries. The collection of this information is generally required by law and is used for planning, monitoring, evaluation and research purposes. Read more

How will linked data be used?

Linked data will be provided to approved researchers to address specific research questions and the results of their studies will be used to inform policy and practice with an overall aim of improving the health and well-being of the population.

Linked data can be used to:

• assess the safety and quality of health care
• assess the effectiveness of preventive interventions (e.g.vaccinations)
• determine the factors that predispose someone to certain diseases and conditions
• obtain follow-up information on participants in research studies and surveys
• monitor trends in the patterns and costs of health care.

Where is the data kept?

The full data collections are only held by the agencies (data custodians) that are responsible for their collection (e.g. a State Health Department), under strict security conditions.  At no time are all the data collections brought together and held in a single linked database. For the actual process of linkage, the part of each record containing the content data (eg diagnosis or treatment) is removed and the personal information (eg name, address and date of birth) is sent to the data linkage unit where it is used to create the linkage keys.  The personal information and the linkage keys are stored in a secure computer server at the linkage unit to which only authorised personnel have access. Read more

Who can access the linked data?

Only researchers who have approval from a Human Research Ethics Committee (HREC), who have signed confidentiality agreements with data custodians and who have sanctioned data security plans in place are allowed to access the data provided for their approved projects.  Researchers are only permitted to use the data for the particular project and must only use it in the precise way that has been approved.  Serious penalties apply for unauthorised access of linked data. Read more

Who decides what data researchers get?

When submitting their project applications, researchers must list their specific research questions and the specific data items that are required to address these questions.  In the first instance, the HREC assesses the request and balances the benefit to the community alongside any risk to personal privacy. Following HREC approval, agencies responsible for the data collections assess the applications and provide final sign-off. Read more

Is my personal information safe?

The safety and security of the personal information involved in the data linkage activities of the PHRN and its data linkage units is of paramount importance.  There are a range of security controls in place to maintain the protection of the data at all times including physical, IT, personnel and administrative security controls. Read more

What happens to the data once a researcher has finished with it; do they have to hand it back or destroy it?

Researchers are only allowed access to the data for their research projects for an approved period of time.  At the end of the period they must dispose of the data in accordance with the data destruction plan contained in their project application and agreed to by the relevant HREC/data custodians and provide notification that this has been done. Both the HREC and the data custodians have the right to audit/monitor/check that the researchers are adhering to the agreed retention and disposal plan. If the researchers don't follow the agreed plan they will be in breach of both their contracts with the data custodians and their HREC approval.

Potential consequences include:

• HREC approval suspended or withdrawn,
• Data custodian refusing to provide data to the researcher in the future,
• Data custodian refusing to provide data to researcher institution in the future,
• Legal action over the breach of contract.