How to request data for secondary use
An overview of the request process can be seen in the Research Data Release - Application Workflow Flowchart.
NT Health maintains health data collections on behalf of the people of the Northern Territory. The data collections contain the health information of individuals and are used to monitor the health of Northern Territorians and support the effective delivery of health services.
The de-identified health information is used for the planning, management and monitoring of health services, and for epidemiological analysis and health related research. It is also used to meet funding and performance reporting obligations.
Health researchers prepared to comply with the necessary application processes and strict conditions outlined in the NT Health data release guidelines may be provided with data from the NT Health data collections for epidemiological analysis and health related research.
All requests for the use of the Department’s data for the purpose of research must have the approval of one or both NT Human Research Ethics Committees, depending on the research and the population to be covered by the research. This includes research projects using NT data held by Australian Government agencies or research partner organisations.
What documents are required to complete a Data Release Request?
For a data request to be considered for research purposes supply the completed documents:
- Data Release Request Form
- Appendix A – Data Specification;
- A copy of the relevant and current HREC Application(s);
- Copies of the research protocol, project proposal, data flow diagram, any consent forms, questionnaires and associated documentation.
Please note if the required information is available in another supplied document, a reference to the document and page number within the Data Release Request Form is acceptable.
For data to be released the following documents will need to be supplied as required by the NT Health data release guidelines (p.17):
- A copy of the relevant and current approval(s) from the HREC;
- Appendix B – Deed of Confidentiality and Compliance; and
- Appendix C – Conditions of Publication (if relevant).
Why do I need to go through this process to access the data?
The NT Department of Health is governed by the following relevant laws, principles and policies:
What is personal information and can it be used in researcher?
Use and disclosure of health information for research and statistical purposes must be consistent with Information Privacy Principle 2.1(ca) and any applicable guidelines issued by the NT Information Commissioner under IPP2.1(ca)(iv) & section 86(1)(a)(iv) - Use and disclosure of health information for research and statistical purposes. Patient/client level information will only be disclosed for research purposes if all such requirements have been complied with. Requests for identifiable information require reasonable justification as to why non-identifiable information is not sufficient for the purpose of the data request.
Personal information is data that discloses a person’s identity or from which a person’s identity is reasonably ascertainable. Information is considered identifiable where:
- It includes specific identifying information (e.g. name, address, date of birth, medical record number); or
- Specific data elements are requested in combination (i.e. Date of birth, sex, postcode); or
- The data is to be combined with other information the requestor already holds or with other datasets that are being requested; or
- The data is aggregated and there are few individuals in a particular category.
Due to the level of granularity, the additional approval of the Department’s Chief Health Officer will be obtained.
What approval is needed to carry out research?
Health researchers prepared to comply with the necessary application processes and strict conditions outlined in the NT Health data release guidelines may be provided with data from the NT Health data collections for epidemiological analysis and health related research. Only de-identified information will be provided if consent has not been given by the individual. Any access to personal information will only be disclosed for research purposes if all of the requirements of the Information Privacy Principal 2.1(ca)(iv) & section 86(1)(a)(iv) - Use and disclosure of health information for research and statistical purposes have been complied with.
All requests for the use of the Department’s data for the purpose of research must have the approval of one or both NT Human Research Ethics Committees, depending on the research and the population to be covered by the research.
Types of approval will be needed to be obtained:
- Relevant ethical approval; and
- NT Health data owner approval which can be obtained via the Research Data Release application
Applications for data release can be submitted in parallel to ethics applications.
How long does the data request process take?
The time needed to process a data request depends on several factors, including the number of data collections required, the type of data requested (some datasets are more complex than others), the size of the study cohort, whether the cohort is generated by the data analyst, as well as the completeness of the request form.
A simple data request where the data is derived from a single dataset involving only aggregate and non-identifiable data may be expected to be processed in less than two months. A complex request where data is derived from multiple data sources and a cohort is generated by the data analyst may take up to 12 months. This length of time can be reduced if the request form is as complete as possible and the data specifications clearly state what data is required.
How will the information be delivered?
Data will be provided in an agreed format, generally as a delimited or fixed width text file or in MS Excel, depending on file size. All files transmitted via the NTG network or email and will be encrypted and password protected, with the password provided separately to the file.
What data is not be released as part of this process?
This request process does not cover the following:
- Human research conducted at NT Health sites and/or involving participants, or tissue accessed through NT Health;
- Primary use data such as quality assurance or quality improvement activities, clinical audits, management of health services and teaching activities;
- NT Health Legislative Registers;
- Freedom of Information (FOI); and
- Media requests
For the NT Health Legislative Registers you can find more information on how to access data the websites below:
How do I access government health and welfare data?
NT Health provides data to the Australian Institute of Health and Welfare (AIHW) via Health sector national minimum data sets (NMDS). AIHW offers a data request service subject to data quality and confidentiality requirements, from a range of AIHW-held databases. Check the AIHW webpage for more information.
Where can I get further information or advice?
For any enquiries relating to the material contained on these pages or to make a data request, please contact Data Quality and Governance Unit via email DataReleaseRequests.DoH@nt.gov.au
The NT Health Research page provides more information about internal research avenues, collaborative research, guidelines for research and evaluation, and the NT Health Research Committee.
The NT Information Commission provides privacy information and advice.
Last updated: 15 November 2018
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