Requesting data for research using consent
If you have participant consent
You may not need to complete an application under the Public Health Act 2005 (PHA) if you have appropriate informed consent from the participants in your study.
If a researcher obtains signed consent from participants to use their personal or identifying information for a clearly specified research study, then the PHA application generally does not apply to health information held by Queensland Health as the disclosure of information is authorised by another act (for example, Section 144 Hospital and Health Boards Act 2011).
Please check the consent decision tree for more information about issues that may impact your data request.
What is the approval process?
To access data from the Statistical Services Branch (SSB) for your research project based on informed consent from the study participants, you will need to email the following information to the Data Custodian in SSB (HSBresearch@health.qld.gov.au):
- A completed consent application with a list of requested data items (including data items required for linkage)
- A copy of a blank consent form and information sheet
- A current ethics approval
- A signed SSB Conditions of Disclosure form
To approve your request, the data custodian needs to be satisfied that the consent form is relevant to the request and provides enough information for the participants to make an informed decision about consent. If SSB is to be extracting or linking external datasets, you should also provide evidence that release of these datasets has been approved by relevant data custodians.
Please contact HSBresearch@health.qld.gov.au as early as possible in the planning process for your consent study as we may be able to provide advice around the wording on your consent form. After your application has been approved, you must provide a list of participants and evidence of participant consent before your request can be processed.
If any of the following circumstances apply, you may need to submit a PHA application:
- Minors (participants under the age of 18 years): SSB does not accept consent from minors, and does not accept parent/guardian consent for data relating to minors (with the exception of perinatal data).
- Birth/Death data: SSB is proxy data custodian of birth and death data from the Queensland Registry of Births, Deaths and Marriages (RBDM) and PHA approval is required for SSB to release RBDM data.
- Proxy consent: SSB does not accept consent from participants being consented by proxy (e.g. by a carer or agent with power of attorney).
- Verbal consent: SSB does not accept verbal consent from participants.
Written consent in SSB
Generally, it is required that participants provide written consent by a signing a paper consent form, however alternative forms of written consent such as an electronic consent form may be considered if participant identity is well established and all elements of informed consent can be satisfied and documented. If your study has used a method of consent other than signed consent forms, please contact HSBresearch@health.qld.gov.au to check if that method of consent will be acceptable to the SSB Data Custodian.