Research collection notice

This research collection notice applies to people who take part in research conducted by, or in partnership with, Queensland Health, including research conducted by the department or the relevant Hospital and Health Service/s.

It applies whether the research takes place in a hospital, health service, community setting or online.

Your research team will also give you information about the particular research project you are being asked to take part in. This will usually be in a Participant information and consent form. It will explain what information will be collected, why it is needed, and how it will be used or disclosed.

The type of information collected will depend on the research you are taking part in.

This may include information such as:

• your name and contact details
• your age, date of birth or other demographic information
• information about your health, medical history and treatment
• information from your health record
• results from tests or examinations
• information you provide in surveys, interviews or questionnaires
• information about your medicines or other treatments
• information about your experiences or opinions
• photographs, audio or video recordings, where relevant to the research
• information about your participation in the research
• information collected during follow-up after you take part in the research.

Your research team will tell you what information will be collected as part of the research.

Personal information collected by Queensland Health will be handled in accordance with the Information Privacy Act 2009.

Information may be collected directly from you or, where permitted by law, from other sources such as your health record, another health service, a doctor or other healthcare provider.

If you provide personal information about another person, such as a family member, you should let them know that you have provided their information for the research and that it may be stored and used or disclosed for the research.

Your research information will usually be coded or de-identified as soon as it is practical to do so. This means information that directly identifies you, such as your name, may be removed or replaced with a code.

Some research information may be collected anonymously. If information cannot be linked back to you, it cannot usually be removed from the research later.

If you may be identifiable in research outputs, such as a photograph, video, recording or quote that identifies you, the research team will tell you and obtain any consent required before using it.

You can choose not to take part in research. Choosing not to take part will not affect your health care or the services you receive from Queensland Health.

If you choose not to provide information that is needed for a research project, you may not be able to take part in that research.

Every research project is different. The research team will only collect information that is needed for the research and other activities related to the research.

Your information may be used to:

• carry out the research
• assess whether you are eligible to take part
• manage your participation in the research
• provide and monitor research-related care, where relevant
• analyse research results
• understand and improve health care and health services
• meet legal, regulatory and research governance requirements
• contact you about follow-up activities related to the research, where you have agreed to this.

Research involving people or their personal information must meet relevant ethical, privacy and legal requirements. Queensland Health research is subject to appropriate ethics and governance processes.

Your personal information will not be used or disclose for purposes other than for research and other activities related to the research unless authorised or required by or under law or you have given your consent, and it has the required ethics and governance approvals.

Depending on the research project, your information may be disclosed to:

• other Hospital and Health Services
• universities or other research organisations working with Queensland Health
• the organisation funding the research
• government departments or agencies
• organisations involved in research regulation, monitoring or quality assurance
• organisations that provide services to Queensland Health or the research team.

The research team will tell you if your information will be disclosed to other organisations outside of Queensland Health as part of the research.

If your research involves disclosing information outside of Queensland Health, the Participant Information and Consent Form will provide further information about this.

Only the information needed for the relevant purpose will be used or disclosed.

Your personal information remains protected by Queensland privacy and confidentiality requirements when it is held by Queensland Health.

You have rights under Queensland law to ask for access to, or correction of, personal information Queensland Health holds about you.

If you want to access or correct information collected about you for a research project, you should first contact the research team. They can explain how your request will be managed.

If you are concerned about the way your personal information has been collected, stored, used, or disclosed as part of research, you can make a privacy complaint.

For enquiries about the research itself or for questions or information about how we protect your personal information, how to access or correct your own personal information, or how to make a complaint about a breach of the Queensland privacy principles and learn how we deal with such a complaint, please contact the research team using the contact details provided in your Participant information and consent form.

For further information about how we manage personal information, you can also refer to the department’s privacy policy. Each Hospital and Health Service has its own privacy policy. You can access their privacy policies by following the links on the About Hospital and Health Services page.