The Application Process
There are 5 steps in the data linkage application process:
- Design
- Apply
- Approvals
- Data Linkage
- Data Provision
Whether you are applying for a project in Tasmania, or a cross/multi-jurisdictional project using Tasmanian datasets, we encourage you to discuss your project with TDLU staff before applying.
Download TDLU Application Overview Diagram (PDF 499.2 KB)
Download TDLU Guide to Applying for Linked Data (PDF 267.1 KB)
Step 1 | Design
During the design phase, the TDLU will meet with you to provide guidance and advice on developing a feasible linkage project that will meet your research aims and goals.
At the end of the Design Phase, you will have a feasible study design and the necessary documents to submit to a Human Research Ethics Committee.
The TDLU encourages researchers to make contact by email in the early stages of study planning. You do not need a complete study protocol at this stage; however, for the most accurate advice it is best to have an idea of:
- The population and outcome of interest,
- The datasets required to achieve your aims,
- The timeframe for your study.
If you wish to proceed, the TDLU will arrange an initial meeting to discuss your project. You will be asked to complete a Quote Request (see "Request a quote" section) prior to this meeting.
Charges apply for the provision of linked data services by the TDLU. Data linkage charges are dependent on a number of factors, including the number of datasets to be linked, the size of the datasets, and the technical complexity of the project.
Prior to your initial meeting with the TDLU, you will be asked to complete a Quote Request through the Online Application System. This is a short version of the data linkage application form suited for the design phase. The Quote Request can be converted to an Expression of Interest once a quote has been provided and accepted.
Please note that the TDLU quote will not include Ethics or Governance fees, and Data Custodians may charge a fee for extraction of data from their collections.
If, after meeting with you to discuss your project, the TDLU determines that the project is technically feasible they will provide a:
- Data Linkage Protocol Diagram (PDF 133.1 KB), and
- Data linkage feasibility letter.
These documents must be obtained before an ethics application can be submitted.
Before submitting an ethics application, researchers must decide which variables are required to meet the study aims. Data variable lists and associated metadata can be found on the website at Datasets available.
Justification must be provided for every variable requested, and variables must be selected on the official checklist provided by the TDLU. Variable lists in any other format will not be accepted by Data Custodians.
Step 2 | Application
During the Application Phase the researcher will need to submit a data linkage application to the TDLU and an ethics application to a NHMRC registered HREC. The TDLU will review and give feedback on your data linkage application, perform consistency checks against ethics documentation, and provide further researcher support and guidance.
At the end of the Application Phase, you will have a finalised study design and the necessary documents for the TDLU to seek approval from Data Custodians on your behalf.
Expressions of Interest for both Tasmanian and cross/multi-jurisdictional data linkage projects can be submitted via the DCA Online Application System (OAS).
The Expression of Interest can be viewed online by the applicant, and once submitted, the TDLU. It is a living document that can be revised in response to feedback or study design changes. All Expressions of Interest will go through at least one round of feedback from the TDLU, with complex projects often requiring more.
For more information about the application process please refer to the step-by-step TDLU Guide to Applying for Linked Data (PDF 267.1 KB)
The TDLU welcomes the opportunity to review the project's draft Ethics application prior to submission to the relevant HREC. This may alleviate the need for an Ethics amendment at a later stage.
Please contact the TDLU for advice on how to share the ethics application.
All projects using linked data provided by the TDLU must have approval from a NHMRC registered Human Research Ethics Committee (HREC) before the TDLU provides final approval.
Single jurisdictional Tasmanian data linkage projects can obtain approval from the University of Tasmania's HREC using Integrity IQ. Projects using linked data from multiple jurisdictions may apply to a specialist National Mutual Acceptance (NMA) Data Linkage HREC, in which case no additional Tasmanian HREC approval is required. If approval is obtained from a non-NMA HREC in a different jurisdiction, it may be eligible for the University of Tasmania's Prior Approval Pathway.
While it is the applicant’s responsibility to obtain ethics approval, the TDLU is happy to assist and will provide documents required to complete the ethics application.
- A study protocol including a description of the data flow
- A data linkage feasibility letter (provided by the TDLU)
- Completed data variable lists (as attachments, not embedded within the protocol)
- Any other documents stipulated in the HREC application
If a project requires data from the Tasmanian Department of Health, or the Tasmanian Health Services, Research Governance Approvals must be obtained from the Health Research Office.
Applications for Research Governance are managed and submitted through the Research Ethics and Governance Information System (REGIS) platform. For multi/cross-jurisdictional projects which already have a REGIS application in NSW or ACT, Tasmania can be added as a Site to the parent application.
More information about Research Governance including documents required for REGIS submission can be found on the Tasmanian Department of Health Website here. Please direct project specific application enquiries to research.governance@health.tas.gov.au.
It is vital that the following information is identical on the TDLU Online Application and HREC applications:
- Researchers
- Datasets
- Date ranges of datasets
- Data variable lists
- Cohort description
- Data storage
The TDLU will only supply data as approved in the HREC application. Failure to ensure that these details are the same in both applications may lead to significant delays in the approval or provision of data, as ethics amendments or additional Data Custodian approvals may be required.
Ethics and Data Linkage Application checklist (PDF 283.7 KB)
Step 3 | Approvals
Data linkage applications require approvals from:
- A NHMRC registered Human Research Ethics Committee
- The Data Custodian responsible for each dataset
- If applicable: The Tasmanian Department of Health (DoH) Research Office (when DoH or Tasmanian Health Service datasets are required for the linkage project)
- The TDLU
Approvals must be obtained in the order listed above. Applications for linked data are carefully considered and reviewed by the relevant HREC and the Data Custodians to ensure that only the information necessary for the fulfilment of the research project is provided.
The TDLU will manage approvals with Data Custodians based on the information supplied in ethics and TDLU documentation. This phase includes formal correspondence with data custodians, documentation management, researcher support, and final TDLU approval.
Once the HREC application is approved, researchers must send a copy of the approved ethics application and approval letter to the TDLU. If all information has been entered correctly and no amendments are required, the TDLU will initiate the Data Custodian approval process.
Please also upload your HREC application and approval notification to the online application system (under Approvals/Ethics Committees).
In most cases, the TDLU will seek approval from Data Custodians on your behalf. The minimum requirements for Data Custodian approval are:
- A completed online data linkage application
- An approved HREC application
- Completed variable lists with full justifications
The TDLU will inform you if more information is required by the Data Custodians.
In some cases, the Data Custodian approvals must be obtained by the researchers. The TDLU will inform you during the design phase if this will be the case for your project.
While the TDLU regularly follows up the approval of projects, the time required to obtain Data Custodian approvals can be lengthy and is out of the TDLU's control.
The Principal Investigator must sign a Data Access Agreement before final approval of the project can be granted by the TDLU. This agreement will include any conditions of data access stipulated by the Data Custodians.
Contact the TDLU for a copy of the Data Access Agreement.
The TDLU will issue its final approval once the required HREC, Governance and Data Custodian approvals are obtained, and a Data Access Agreement is signed. Researchers will be provided with a copy of the Researcher Terms & Conditions (PDF 512.1 KB).
Step 4 | Data Linkage
Data linkage is undertaken by the TDLU and data custodians. This phase generally does not require action from the applicant, except for where researchers are providing a dataset for linkage. The data linkage phase concluded when the TDLU send linkage keys to the Data Custodians.
The TDLU conducts probabilistic linkage and on completion of linkage creates Project Person Identifiers (PPIDs). New PPIDs are generated for every discreet data linkage project. This method ensures the same individual cannot be identified across different research projects.
On completion of linkage, the TDLU will provide the researchers with a data linkage statement which provides a summary of the linkage undertaken, and a copy of the Researcher Terms & Conditions (PDF 512.1 KB).
Linkage key files containing Project Person Identifiers (PPIDs) are provided to data custodians via Kiteworks, a secure file exchange service. Data Custodians attach the approved clinical/activity data to the PPIDs and remove the source identifiers before sending the de-identified file to the researcher via Kiteworks. In some cases files are loaded directly to the SURE, a remote-access data research laboratory for researchers to conduct their analysis.
Step 5 | Data Provision
Data provision is performed by the Data Custodians.
Researchers will receive their final de-identified linked datasets directly from Data Custodians. Where there are multiple datasets included in the linkage, they will arrive at different times depending on the Data Custodians’ work schedule. Researchers will be required to merge the datasets by PPID.
Linked datasets are often very large and can provide unique challenges, the TDLU recommends consulting with a statistician or, if available, someone experienced in the handling of linked data.
The Data Access Agreement and researchers terms and conditions outline the obligations of the researchers following receipt of data. This includes the provision of all draft publications to the TDLU for Data Custodian review at least 2 weeks prior to submission.