The AIHW is an accredited data integration service provider.
We provide a service to assist researchers obtain appropriate permissions to link and use personal information in research, as well as undertake the data linkages, and provide access to data through secure environments.
The AIHW receives a high-volume of requests for data linkage services and operates on a cost recovery basis. There are charges that apply to different stages of the process. Researchers are advised to allocate plenty of time for this process to ensure their applications meet the requirements for linkage and can proceed through our linkage queue.
Every effort is made to minimise the time taken to progress projects through the necessary ethics and data linkage steps. To assist the AIHW, researchers are requested to consult our Researcher resources section and ensure they are informed regarding their required involvement in these steps.
Accessing linked data
There are 3 compulsory steps to the data linkage process prior to the technical linkage.
1. Feasibility questionnaire
The AIHW Data Integration Services Centre is committed to working together with researchers to:
- identify appropriate privacy and ethical mechanisms for the use of personal information in research
- plan linkage projects that are efficient and minimise the potential risk and harms to participants
- ensure that data requested for linkage will answer the proposed research questions
- ensure that study aims are achievable using the proposed linkage methodology.
To help achieve these goals the short feasibility questionnaire seeks to gather information that will allow AIHW to identify any technical, privacy or ethical issues that require resolution before completing a full technical assessment. Once you complete and send us your completed feasibility questionnaire, the AIHW charges for its review. These fees are shown on the quote requests & fees page. Before requesting the feasibility questionnaire, it is best to have a good understanding of the following:
- the parties transferring or receiving personal or identifying information and the legal mechanism for both transfer and receipt
- the datasets required to be linked and the existence and quality of personal identifiers to facilitate this
- how your study cohort (and any comparators) will be defined within your project’s datasets.
Your organisation may have experts or experienced linkage researchers who can help you with these questions.
Please email the Data Integration Services Centre at [email protected] to obtain a ‘request for linkage of national data: feasibility questionnaire form.
Complete the form and return it to [email protected]
Upon submission for review, you will be issued an invoice for the appropriate feasibility and quotation fee.
Upon approval of your feasibility questionnaire you will be sent a technical assessment form. An invoice for the feasibility assessment service and a whole-of-project quote will also be issued for acceptance before progression to ethics approvals.
2. Technical assessment
The technical assessment provides the AIHW Ethics Committee with information about the technical elements of your project.
All technical assessments must be signed off by the Data Integration Services Centre prior to consideration by the AIHW Ethics Committee. You will upload the completed document to EthOS and it is important that this document accurately describes your project as AIHW cannot facilitate any use of data which falls outside its specifications.
It is your responsibility to complete the technical assessment form and return it to [email protected].
Please leave plenty of time for the technical assessment to be finalised. Final (not draft) technical assessment forms need to be completed and sent to us at the Data Integration Services Centre at least 4 weeks before the AIHW Ethics Committee meeting application submission deadline.
The Data Integration Services Centre will make every effort to progress your project as quickly as possible, we cannot guarantee that all projects will be assessed in time for submission to an upcoming AIHW Ethics Committee meeting.
Visit our Researcher Resources for information about national datasets and helpful tips to assist you along the linkage pathway.
3. Ethics approvals
Although the AIHW Ethics Committee only considers linkage projects after the Data Integration Services Centre technical assessment has been completed; the assessment may involve engagement with the Ethics Secretariat to identify, investigate, and resolve privacy and ethical issues prior to submission.
Using the online EthOS system, please register your project and begin completing the AIHW Ethics Committee application form as soon as possible.
You can make a start on your AIHW Ethics Committee application at any time. However, you will need the signed-off technical assessment form to actually lodge the ethics application. It is also important that information in your technical assessment and EthOS forms are consistent.
Researchers may also be required to obtain additional approval from a National Health and Medical Research Council (NHMRC) registered or certified human research ethics committee.
Visit AIHW Ethics Committee for more information, including EthOS application fee details.
Queries about EthOS and AIHW Ethics Committee processes should be directed to [email protected].