Applying for Linked Data
An overview of the key steps involved in applying for and receiving linked data from the Tasmanian Data Linkage Unit is outlined in this diagram. Click to download Application Overview (pdf)
Prior to completing and submitting an application involving data linkage, please read through the following information.
During the design phase, the TDLU will provide advice and guidance to ensure the design of the data linkage will meet your research aims and goals. This will include:
|Project discussion with TDLU||Researchers should have a clearly-formulated project plan which takes into account the research aims and objectives, the data required to achieve the research aims, identifies the key stakeholders, and sets achievable timeframes. 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. Contact the TDLU at email@example.com or by phone 03-6226 4291.|
|Request a quote||Charges apply for the provision of linked data services by the TDLU. To obtain a quote, contact the TDLU directly, or submit a quote request through the online application system (see Step 2). Where required, the TDLU is able to provide indicative pricing prior to making an application. |
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. Charges also comprise a client servicing component and a fee covering the infrastructure required to support the operations of the TDLU. Please note that data custodians may charge a fee for extraction of data from their collections.
|Data linkage diagram||If the project is technically feasible the TDLU will provide a Data Linkage Protocol Diagram|
|Data linkage feasibility letter||If the project is technically feasible the TDLU will provide a data linkage feasibility letter to submit with your Ethics application.|
|Complete data variable lists||Data variable lists and associated metadata can be accessed on the Datasets Available page|
|Draft Ethics application feedback||The TDLU welcome the opportunity to review the project's draft Ethics application prior to submission to the UTas HREC. This may alleviate the need for an Ethics amendment at a later stage.|
Applications for linked data involve two online applications:- 1. TDLU application, and 2. Ethics application. We suggest that researchers apply to both concurrently.
- 1. Applications for linked data for Tasmanian and cross/multi-jurisdictional projects can be submitted via the online application system. Please refer to the step-by-step TDLU Guide to Applying for Linked Data and the Ethics and Data Linkage Application checklist. Complete and submit your Expression of Interest and upload your completed data variable lists.
- Applicants requesting Commonwealth Government held datasets, including National Death Index (NDI), Australian Cancer Database (ACD), Medicare Benefits Scheme (MBS) or Pharmaceutical Benefits Scheme (PBS) must also complete an application to the AIHW Ethics Committee. Researcher resources for data linkage to Commonwealth datasets are available here.
APPLY HERE:Online TDLU application
- 2. Apply for Ethics approval for linked data projects: All projects using linked data provided by the TDLU must have Ethics approval prior to the TDLU approving the project. Applications for access to linked data are carefully considered and reviewed by the University of Tasmania Human Research Ethics Committee (HREC) to ensure that only the information necessary for the fulfilment of the research project is provided. HREC approval will also stipulate the use, disclosure and retention of information made available. For example:
- Each researcher on the project must be listed and approved;
- Information must not be given to persons not listed on the ethics application;
- Researchers can only use the data provided for the particular research project that has received approval;
- The data must only be kept for a specified period of time and then either destroyed or returned to the data custodian as per the approval conditions specified.
APPLY HERE:Online UTas HREC application
What to submit with your HREC application:
|Data linkage feasibility letter||Select the TDLU to undertake data linkage in the ERM and attach the feasibility letter|
|Data Linkage Protocol diagram||see sample linkage diagram|
|Completed data variable lists||data variable lists|
|Project relevant documentation||eg study protocol, consent forms, participation information|
|The following information must be identical in your TDLU and HREC applications:||Requested datasets; Date ranges of datasets; Data variable lists; List of researchers|
Applications for access to linked data are carefully considered and reviewed by the data custodian(s) in charge of the data and by the HREC to ensure that only the information necessary for the fulfilment of the research project is provided.
- Once your HREC application is approved, upload your HREC application and approval notification to the online application system (under Approvals/Ethics Committees)
- The TDLU will then seek approval from Data Custodian/s on your behalf. TDLU will also notify you of expected timeframes for linkage and provision of linked data.
- TDLU provides you with final approval/ non-approval and Researcher Terms & Conditions.
The TDLU will contact relevant Data Custodians and negotiate the supply of data for linkage if new data are required. If the linkage includes a researcher cohort, the TDLU will provide a cohort request letter which includes formatting specifications for linkage variables.
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.
Linkage key files 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.
Researchers will receive their final 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.
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.
Once researchers have received all of the linked data, the TDLU will issue an invoice for payment.