We manage several clinical quality registries (CQRs). The primary purpose of a CQR is to collect, analyse and report health information about patient care and outcomes provided by NSW Health services.
Organisations may request access to these datasets in line with NSW Health policies and procedures. Information captured by CQRs serves the following purposes:
General information about clinical quality registries.
Data requests
Anyone with appropriate delegation and justification can request access to the data in line with NSW Health policies and procedures. A request to access data needs to be for the benefit of public health. This could be for research, service planning, education or advocacy.
Data requests are supported by a secure online platform and governance process that enables a clear and consistent approach to review, analyse and approve data requests.
This aims to:
- streamline communication between requesters and data stewards
- improve visibility and transparency for the appropriate approval, release and sharing of data in accordance with appropriate governance
- improve record keeping and auditing for all data requests and decisions.
Privacy and data governance
Our processes for gathering, storing, maintaining and sharing data comply with the relevant NSW Health policies and frameworks, including:
Requesting access to data
Requesters must complete the Data Request and Approval Form.
The full list of ACI-managed data assets and data dictionaries can be found within the form.
For back- to-notifier data requests, allow up to 5 business day for the data request to be assessed.
For non back-to- notifier data requests, allow 3 to 5 weeks for the data request to be assessed and progress through approval channels.
Requesting Aboriginal and Torres Strait Islander data
Closing The Gap Priority Reform 4 states that “Aboriginal and Torres Strait Islander people have access to, and the capability to use, locally relevant data and information”. Therefore, disaggregated data may be provided upon request, where appropriate and approved. This means the data are separated into two components: the Indigenous cohort and the general cohort.
Requesters must seek approval from the NSW Aboriginal Health and Medical Research Council (AH&MRC) Ethics Committee if one or more of the following apply:
- Aboriginal and/or Torres Strait Islander people are the sole focus or primary sub-group in the analysis of the requested data.
- The experience of Aboriginal people is an explicit focus of all or part of the research.
- Data collection is explicitly directed at Aboriginal peoples.
- Aboriginal peoples, as a group, are to be examined in the results.
- The information has an impact on one or more Aboriginal communities.
- Aboriginal health funds are a source of funding.
Tips for requesters
- Understand the relevant data asset.
- Discuss the request and requirements for data release with the data steward. The data steward name will automatically populate in the form. Provide as much information as possible.
- Gain approvals before submitting the request.
- The relevant data dictionary can be downloaded when a data asset is selected on the form.
Frequently asked questions
All data requests are reviewed by the data steward. They are responsible for the day-to-day management and operation of the data asset, its completeness and quality.
All data requests that are not 'back to notifier' are reviewed by the data custodian and the ACI Chief Executive. They are responsible for oversight of the data asset, approval to access the data, and the overall quality and security of the asset.
An organisation or health agency that has provided unit record data to the ACI may request a copy of that information be returned to them. This is called 'back to notifier' disclosure. For more information see Policy Directive - Data Collections – Disclosure of Unit Record Data for Research or Management of Health Services.
Unit record data may be returned to the original notifying agency without further approval, providing the information returned does not contain additional personal information from another source. ‘Back to notifier’ disclosure is only valid where the request is made or approved by a person who has the delegated authority over the relevant unit record data.
Each request is unique and will be assessed by the ACI data steward based on the NSW data sharing principles. Adhere to these principles when completing your request. The assessment process will focus on the risk associated with each request.
Requesters and reviewers share responsibility for applying risk mitigation strategies to minimise potential risks for individuals, groups or an organisation.
The approval process is automated, via the online form. Emails to the data steward and data custodian are embedded in the form. Approval is triggered within certain steps, and the system will send an email notification to the person who is responsible for the next review and assessment.
Regular requests is when the same data is requested for the same use case over a defined period of time; and there is no change to the data or the purpose of disclosure, sharing or use. This can be approved by the custodian for a 12-month period. If there are any changes to this request, a new request will need to be submitted.
Ethics approval will assist us to assess the request but does not guarantee data release. The data request approval process complies with the NSW Health policy directives, principles and statements.
When the data steward releases data, requesters must comply with the conditions of release and sign the confidentiality undertaking with a witness. This aligns with the Policy Directive - Disclosure of Unit Record Data for Research or Management of Health Services.
The use, sharing, storage and disposal of data must also comply with the policy directive of the relevant data asset.
- Save unfinished form and return later: you can save an unfinished form and return later by clicking the ‘Save & Return Later’ button. You will be asked to enter an email address to receive a return link. Use this link to access the saved form, modify any information previously entered, and proceed with the application.
- Submit the form: once the ‘Submit’ button is clicked, you won’t be able to access the form unless the return link has been activated as above. You must answer every question to be able to submit the form.