What is the Population Health Research Network (PHRN) and what do you do?
The PHRN is Australia's first national data linkage network. The PHRN is not in itself an organisation, rather a network of collaborating organisations spread across Australia. Together our role is to build the infrastructure to safely and securely link approved population 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 investment funding consists of three sources of funding. These include cash contributions from the Australia Government, co-investment funding cash contributions and in kind contributions. The latter two are sourced by Project Participants in each State. Investment from the Australian Government came under three major national research infrastructure initiatives. These included the: National Collaborative Research infrastructure Strategy; Education Investment Fund Super Science Initiative; and the Collaborative Research Infrastructure Strategy. >Read more…
Who is accountable for the PHRN?
The University of Western Australia is the Lead Agent for the PHRN. It has overall responsibility for the PHRN in accordance with the reporting and accountability requirements outlined in Funding Agreements. The PHRN is governed by a Board which provides oversight and strategic direction. The PHRN Board receives advice from the PHRN Participant Council which includes members from each of the PHRN Project Participants. >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 links 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. Data Linkage Units use these pre existing data and maximise their use. Data Linkage Units do not collect data directly from individuals nor do they instigate the collection of data. >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; and
- 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 (e.g. diagnosis or treatment) is removed and the personal information (e.g. 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.
Data analysed within SURE are stored on dedicated servers hosted in a high security data centre with strict access controls and 24-hour security surveillance. No data are stored on a researcher's local computer or on their institutional network. Within SURE, users cannot access the internet, print or use removable media. The mechanism to move files into and out of the facility is a purpose built software application called the Curated Gateway which ensures data transferred into and out of the facility is encrypted end-to-end and also keeps a complete audit trail of all information entering or leaving the facility. All files uploaded via the Curated Gateway are subject to review prior to being made available within the facility or removed from the facility. For further information on SURE security arrangements, see the Guide to SURE or contact the SURE team.
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 researchers apply for data using data linkage the amount of information given to them for a project is strictly confined.
When submitting their project applications, researchers must list their specific research questions and the specific data items that are required to address these questions. It is the role of data custodians responsible for the data collections requested and ethics review bodies in their review of research applications to make sure that researchers are only given information that is deemed necessary for the research project.
In special circumstances, researchers may apply for personal information. However a researcher must prove to the ethical review body and the data custodians that the personal information requested is essential in answering their research question and that the public interest in the research substantially outweighs the risk to privacy.
Is my personal information safe?
Since Data Linkage Units have been introduced there has been an improvement in the secure handling of information and a subsequent, significant decrease in the number of research project's using identifiable data. The data linkage method used by the PHRN means that researchers can conduct research using information which cannot be identified by the researcher. >Read more about privacy...
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 about security…
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; and
- Criminal prosecution which can result in fines or imprisonment.