If you’re considering applying for linked data and are fairly new to the process, we recommend you speak to Data Linkage Branch (DLB) Client Services and the relevant Data Custodians before you apply. We also recommend you attend the Data Linkage Branch Data Applicant Training Course.
The application process is fairly complex and involves many stakeholders, however you’ll be assigned a Project Coordinator from the DLB Client Services team to take you through the process from start to finish so you can always refer to them for guidance and advice. The flowchart below summarises the application process and the interactions of each stakeholder group throughout the process.
Please see the full WA Linked Data Application Process Flowchart for a more detailed overview of the application process.
Step 1: Feasibility Assessment
All Data Applicants must submit a draft Application for Data before applying for Department of Health WA Human Research Ethics Committee approval. This Feasibility Assessment phase allows Data Custodians and the DLB to provide advice on the request and to identify and correct any issues before work begins on the project.
Draft applications should be submitted via email to DataServices@health.wa.gov.au and at a minimum should include:
- Draft Application Checklist
- Application for Data Form
- Data Services Forms (linkage form, extraction form etc.)
- Dataset Variable Lists for all datasets requested
The draft Application for Data will be processed by the DLB Client Services Team, who will review and assist with the revision of documentation prior to presenting it to the relevant Data Custodians.
- Initial feedback on draft Applications for Data (prior to Data Custodian review) will be given within two weeks of submission. Applications may only be presented to Data Custodians for review after all initial feedback from DLB Client Services is addressed.
- The Data Custodians will then review the application and advise whether the data requested is appropriate for the purposes of the study, give guidance on issues such as privacy, data availability and quality and suggest changes. The review process is iterative and may require a number of revisions and resubmissions of the Application for Data.
- After the Feasibility Assessment is complete and in-principle support has been provided by the relevant Data Custodians, the DLB will provide a feasibility letter to indicate clearance of this stage. This ensures that all relevant changes have been incorporated, and ensures efficiency in the submission to the Department of Health Human Research Ethics Committee (if applicable) and subsequent release of data. Data Applicants should be aware that Applications for Data that do not have a feasibility letter attached will not be accepted by the Department of Health Human Research Ethics Committee.
For assistance with completing an Application for Data, please contact the DLB Client Services Team at DataServices@health.wa.gov.au
Step 2: Ethical Review
Department of Health WA Human Research Ethics Committee
All research projects using linked data require approval from the Department of Health WA Human Research Ethics Committee (Department of Health WA HREC). The Department of Health WA HREC is a Human Research Ethics Committee with special responsibility for oversight of the use and disclosure of personal health information held in the Department of Health data collections.
After receiving in-principle support from the DLB and Data Custodians, a formal Application for Data and ethical review can be submitted to the Department of Health WA HREC via the WA Health Research Governance System (RGS).
The following should be submitted to the Department of Health WA HREC :
- WA Health Application for Ethics Review
- Application for Data
- Data Services Forms
- Variable Lists
- Feasibility Letter
- Other supporting documentation
- Declarations of Confidentiality
- Relevant Research Governance Forms
Please note that if the Department of Health WA HREC requests changes to the Application for Data, Data Services forms or variable lists, this must first be discussed with the DLB Client Services Team before resubmitting updated documents to the Department of Health WA HREC .
Western Australian Aboriginal Health Ethics Committee
If data is being requested to perform health-related research involving Aboriginal or Torres Strait Islander people, ethics approval must also be sought from the Western Australian Aboriginal Health Ethics Committee (WAAHEC).
In particular, projects should be submitted to WAAHEC if one or more of the following apply:
- Aboriginality is a key determinant
- Data collection is explicitly directed at Aboriginal or Torres Strait Islander people
- Aboriginal or Torres Strait Islander, as a group, will be examined in the results
- The information has an impact on one or more Aboriginal or Torres Strait Islander communities
- Aboriginal Health funds are a source of funding
Step 3: Approval for Data Release
After the Department of Health WA HREC has approved the project, the final Application for Data (as approved by the Department of Health WA HREC ) must be lodged with the DLB Client Services Team, via email to DataServices@health.wa.gov.au.
This submission should include:
- Signed Application for Data form (as approved by theDepartment of Health WA HREC )
- Data Services forms
- Variable lists for all data collections
- the Department of Health WA HREC approval letter
- Any other ethics approval letters
- Research protocol (if available)
- Participant Information and Consent Information (if applicable)
- Other supporting documentation
For assistance with lodging your formal application, please contact DLB Client Services at firstname.lastname@example.org.
The DLB Client Services Team will coordinate approval for data release by the applicable Data Custodians/Stewards. Data Applicants will be provided with a final approval letter to indicate clearance of this stage.
Step 4: Research Governance Approval
All human research conducted linked data via DLB must undergo a governance review which is the mechanism for professional, legal and financial accountability and transparency and is consistent with the NHMRC’s Australian Code for the Responsible Conduct of Research 2007 (external link).
The governance review is a separate process to the ethical and scientific review and should be conducted in parallel to the ethics approval process. It is not necessary to await the ethics outcome before preparing and submitting a governance application to the relevant Research Governance Office.
All applications for research governance review must be submitted via the RGS. Applications must include either:
- a Site Specific Assessment (SSA) Form and supporting documentation: for projects conducting an intervention at a site or sites under the jurisdiction of the Department of Health WA HREC or if a project will require access to physical resources or staff within the Department of Health WA HREC and/or it auspices; or
- an Access Request Form and supporting documentation: for projects requiring access to participants, their tissue or their data.