COVID-19 register and linked data set

This project will establish a national linked data platform to provide greater insights into the longer-term impact of COVID-19 on the health of the Australian population and the health system.

The data will be used to strengthen evidence-based public health and health system planning and management for current and future pandemics.

Emerging evidence of the medium and long-term effects of COVID-19 present a need for immediate information and ongoing monitoring of the health outcomes and health system needs of people who have had a COVID-19 diagnosis.  Potential research questions that can be informed by the linked data set include:

• Identifying risk factors for COVID-19 to improve health outcomes of Australians
• Helping governments plan and manage health resources, e.g., in aged care facilities
• Health service providers gain a better understanding of the service and treatment needs of those with COVID-19 and ‘long COVID’
• Improving the completeness and accuracy of epidemiological data
• Provide a foundation for a wide range of future research purposes
• Make robust, easily digestible information available to the public.

The COVID-19 linked data set combines COVID-19 notification data from Australian states/territories and the Commonwealth Department of Health National Notifiable Disease Surveillance System (NNDSS) with the following administrative data sets:

• Medicare Consumer Directory (MCD)
• National Death Index (NDI)
• Medicare Benefits Schedule (MBS)
• Pharmaceutical Benefits Scheme (PBS)
• National Hospitals Morbidity Database (NHMD)
• National Non-Admitted Patient Emergency Department Care Database (NNAPEDCD)
• National Public Hospitals Establishment Database (NPHED)
• National Aged Care Data Clearinghouse (NACDC)
• Australian Immunisation Register (AIR)

Examples of broad areas of research that may be informed by analysis of the national linked COVID-19 data set include:

• epidemiological and statistical research
• service use and medication dispensing and patient journeys
• identifying groups or cohorts of interest
• monitoring, evaluation and data quality improvement.

Use of the de-identified data set outside these listed themes must be justified to the principal investigator and, where appropriate, an amendment to the ethics approval will need to be submitted.

For more information on potential research questions, please refer to the fact sheet (PDF 195kB).

The data set is anticipated to be ready in December 2022 and will be updated periodically.  A summary web report is anticipated to be published on the AIHW website in December 2022 and updated report will follow in December 2024.

The AIHW manages data with respect for its sensitivity, and with privacy and confidentiality assured through legislation, accountability practices and procedures. The AIHW also manages relationships with data custodians to ensure accountability and appropriate use of the relevant data collections.

The AIHW protects the privacy of an individual through a process of de-identification. This involves removing identifying information (for example, a person’s name, address or Medicare number) so that researchers are unable to tell who the information belongs to.

All approved researchers who are provided access to the de-identified research data will be required to submit a project proposal including a data analysis plan and a signed AIHW Act 1987 s29 Undertaking of Confidentiality form. This form protects the privacy of individuals by making it a criminal offence to disclose information about the participants of a study, punishable by fines and/or imprisonment.

AIHW anticipates access to the linked data to be available to Australian government researchers by December 2022

This is on the condition that the use case aligns with the purposes of the project. All users wishing to access the National COVID-19 linked data set will need to be complete a project proposal form which will be reviewed by AIHW and relevant custodians. To assess your eligibility to apply for the linked data set – please see the Resources for researchers page.

All other researchers will have the ability to apply for access to the data in future stages of the project once all relevant ethics and data custodian approvals for access and use arrangements have been obtained.

At present, data can only be accessed by approved researchers from locations within Australia. Data provided as part of this linked data set are not to be accessed from overseas locations or stored on servers located overseas.

The current iteration of a data variable list can be viewed on the Resources for researchers page.

The data set will be available to researchers through the AIHW-curated secure hosting environment. There are costs involved with maintaining and monitoring data access in the computing environment, and while the AIHW will also cover most of these costs, there may be some partial cost-recovery required for this service, depending on demand (as is usual for access to other computing environments).

Researchers must have the ability to use at least one of the statistical analytical languages available in the secure remote environment (e.g., R, Python, Stata). Experience with analysis of linked data would be beneficial.

If there is a requirement for future linkages to other sources of information, ethics approvals will need to be obtained from the relevant data custodians. This is an ongoing process and any additional data sources that are approved for linking, will be updated by AIHW to the linked data set at regular intervals.

Researchers must not attempt to link external data to the COVID-19 linked data set to preserve its integrity and maintain privacy requirements. Personal project numbers are assigned for each unique individuals in this linked data set and as such, they remain specific and relevant only to this cohort.