If you’re considering applying for linked data and are fairly new to the process, we recommend you speak to the ISPD Client Services team and the relevant Data Custodians before you apply.
ISPD Client Services has developed a data application guide to assist applicants with drafting their applications. We strongly recommend applicants refer to the guide when drafting their applications.
The application process is fairly complex and involves many stakeholders, however you’ll be assigned a Project Coordinator from the ISPD 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 WA Linked Data Application Process Flowchart summarises the application process in detail and the interactions of each stakeholder group throughout the process.
The ISPD Client Services will close from 15 December 2022 to 29 January 2023 to transition current functions back with non-research client services as part of reforms to provide a seamless user experience.
Offices of the data linkage, data engineering and client services teams will be closed from 28 December to 2 January 2023 and reopen on 3 January 2023.
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 ISPD Client Services 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 DataServ@health.wa.gov.au and at a minimum should include:
- Draft Application Checklist
- ISPD Client Services Forms (linkage form, extraction form, etc.)
- Dataset Variable Lists for all datasets requested
Please note that applications for cross-jurisdictional linked data can be made via the PHRN Online Application System.
The draft Application for Data will be processed by the ISPD 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 ISPD 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, ISPD Client Services 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 ISPD Client Services Team at DataServ@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 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, ISPD Client Services forms or variable lists, this must first be discussed with the ISPD 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 ISPD Client Services Team, via email to DataServ@health.wa.gov.au.
This submission should include:
- Signed Application for Data form (as approved by the Department of Health WA HREC)
- ISPD Client 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 ISPD Client Services at DataServ@health.wa.gov.au.
The ISPD 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 using linked data 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 its auspices; or
- an Access Request Form and supporting documentation: for projects requiring access to participants, their tissue or their data