Requesting data for research using patient consent
If you have patient consent
You do 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).
Consent cannot be used to request data about children under the age of 18 years, even with the consent of a parent/guardian.
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 supply the following information to the Data Custodian in SSB:
- 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.
After your application has been approved, you must provide a list of participants and a sample of signed consent forms (randomly selected by SSB) before your request can be processed.
Written consent in SSB
The Statistical Services Branch (SSB) is currently reviewing the requirements for releasing data with patient consent. At this time SSB are only accepting written consent in the form of a signed consent form (i.e. not an email or internet survey) as evidence of the informed consent provided by the participant. Other forms of consent will not be accepted. Consent forms signed by guardians/carers will also not be accepted.