Applying for Linked Data
An overview of the steps involved in applying and receiving linked data is detailed in the attached flowchart (PDF 285KB).
Prior to completing and submitting an application please complete the following steps;
Step 1 – Plan your study
Have a clear research project plan with consideration to the following questions;
- What is the research trying to achieve?
- What data is required to complete the research?
- What are the timeframes involved?
- Who are the key stakeholders?
Step 2 – Contact the Tasmanian Data Linkage Unit
- Contact the Manager TDLU on (03) 6226 4717(03) 6226 4717 (or email firstname.lastname@example.org) to discuss your study. The TDLU will provide advice and guidance on whether the data linkage is feasible and provide the relevant documents to apply for data linkage.
The role of ethics committees
Applications for access to linked data are carefully considered and reviewed by a Human Research Ethics Committee (HREC) to ensure that only the information absolutely necessary for the fulfilment of the research project is provided.
All projects requiring the use of linked data provided by the TDLU must have Ethics approval prior to the TDLU approving the project.
The HREC Tasmania consists of two NHMRC registered human research ethics committees, the Tasmania Health and Medical HREC and the Tasmania Social Sciences HREC.
The Tasmania Health and Medical Human Research Ethics Committee (HREC) is responsible for reviewing all research projects that involve the following:
- Invasive physiological, clinical, and/or medical interventions
- Research involving the use of human tissue (including blood, reproductive and other tissues)
- Human genetic research
- Staff, patients or resources of any hospital in Tasmania (both Public and Private)
The Health and Medical HREC has a subcommittee called the Tasmania Scientific Research Advisory Committee (TSRAC). The SRAC considers the scientific validity, merit, integrity and safety of health and medical research proposals before they are considered by the Health and Medical HREC.
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.
The Tasmania Social Sciences Human Research Ethics Committee (SS HREC) is responsible for reviewing a broad range of research areas including psychology, sociology, arts, education, law and business.
Linking to Commonwealth Data Applicants requesting Department of Health and Ageing (DOHA) or other Federal Government held data including National Death Index (NDI), Australian Cancer Database (ACD), Medicare Benefits Scheme (MBS) or Pharmaceutical Benefits Scheme (PBS) must complete a National Ethics Approval Form (NEAF) and submit to the relevant ethics committee.
The approval process
Applications for access to linked data are carefully considered and reviewed by the data custodian(s) in charge of the data and by a Human Research Ethics Committee (HREC) to ensure that only the information absolutely necessary for the fulfilment of the research project is provided.
The TDLU facilitates the approval process with the relevant data custodian(s) after HREC approval has been obtained for the project.
Once approval has been granted from both the data custodian(s) and from HREC, the project is considered by the TDLU. Once approval has been granted, the researcher is notified of expected timeframes for linkage and receipt of linked data.
Charges normally apply to the provision of linked data. A formal quotation will be supplied by the TDLU upon application and an indication given prior to formal application where possible.
The estimated data linkage cost is 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. Quotes will also comprise a client servicing component and a fee covering the hardware, software and human resources to build and maintain the Master Linkage Map. It is important to note that data custodians may charge a fee for extraction of data from their collections. This fee will be included in the total price for linkage.