COVID-19 Register

This project has established a 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 set can 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 COVID-19 Register include:

• Identifying risk factors for COVID-19 to improve health outcomes of Australians
• Helping governments plan and manage health resources, for example: 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 Register combines COVID-19 notification data from participating Australian states/territories and the Commonwealth Department of Health National Notifiable Diseases 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)
• Australian and New Zealand Intensive Care Society (ANZICS)
• National Disability Insurance Scheme (NDIS)

Examples of broad areas of research that may be informed by analysis of the COVID-19 Register 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 Table 1. Approved research themes and potential analysis questions.

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.

All users wishing to access the COVID-19 Register will need to complete a project proposal form which will be reviewed by the AIHW, the Data Advisory Group and relevant custodians. To assess your eligibility to apply for the COVID-19 Register- please see the Researcher eligibility page.

At present, data can only be accessed by approved researchers from locations within Australia. Data provided as part of the COVID-19 Register are not to be accessed from overseas locations or stored on servers located overseas.

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

The COVID-19 Register has been built to ensure interoperability with existing national data assets, such as the AIHW’s National Health Data Hub (NHDH) (formerly referred to as the National Integrated Health Services Information (NIHSI)) and the Australian Bureau of Statistics’ Person Level Integrated Data Asset (PLIDA). The COVID-19 case data from the COVID-19 Register is in the process of being integrated with the NHDH. Integration will re-use current data infrastructure to support and streamline broader data integration, bring AIHW data holdings together using a modular approach as needed and as approved per project, and most importantly reduce duplication of effort.

With the integration, the COVID-19 case data will be included as a separate module in the NHDH and include case data from January 2020 to December 2022. There will be no further updates to the COVID-19 case data due to relaxation in testing and reporting requirements, which limit the completeness of data after this time. 

The other administrative datasets such as MBS, PBS, deaths, disability, immunisation, hospital and aged care data will continue to be regularly updated in the NHDH. The AIHW is also working towards having more datasets available in the NHDH over time. For more information, refer to NHDH Data & data items.

Currently the data set is available to researchers through the AIHW-curated secure remote access environment (or through an AIHW managed instance of the Australian Bureau of Statistics (ABS) Secure Environment for Analysing Data (SEAD) once the COVID-19 Register is integrated with the NHDH). There are costs involved with maintaining and monitoring data access in these computing environments.

Please contact [email protected] to discuss your project and the charges that apply.

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

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