How often will I hear from the LIVES Panel?

There is no set schedule. You will only hear from us when a study becomes available that may be relevant to your profile.

What kind of research might I be invited to take part in?

You may be invited to take part in studies on a broad range of topics. These could include things like your everyday life experiences, health experiences, service and consumer experiences, views and opinions on topics that have come up in your life. You may be invited to complete surveys, participate in interviews, or participate in other forms of research such as focus groups.

Each invitation will include clear information about what is involved, so you can decide whether it feels right for you.

Can I update my details after I join?

Yes. If your circumstances or contact details change, you can update your information at any time by getting in touch with the LIVES Panel team.

What happens if I am interested in a study?

If you decide you would like to take part, you will contact the study research team directly using the details provided in the invitation we send you. They will then guide you through the next steps, including a consent process for their study. They might have some more, specific questions for you to ensure you are the right fit for their study.

Will the LIVES Panel team be involved in the research itself?

No. The LIVES Panel helps connect people with lived experience to researchers, but we do not conduct the research and do not have access to the information you share with researchers as part of a study.

How are research studies selected to access the panel?

Research studies seeking to access people in the LIVES panel must have human research ethics approval from their university or institution. All requests to access the panel are reviewed by the LIVES Panel team. We consider the benefits of each project, what participation will involve, and whether the study is appropriate to share with panel members before deciding whether to circulate it.

What can I do if I have a complaint about a study?

All studies should provide a Participant Information Statement and Consent Form. This will usually include the study’s ethics approval number and contact details for the relevant institution, which you can use if you wish to make a complaint.

What can I do if I have a complaint about the LIVES Panel?

If you have a complaint about the LIVES Panel, you can contact the UNSW Human Research Ethics Coordinator by phone on +61 2 9385 6222 or by email at humanethics@unsw.edu.au. When making your complaint, please refer to the LIVES Panel ethics approval number iRECS9468.

Will I hear about the results of the research?

Researchers who use the LIVES Panel are expected to offer participants the opportunity to hear about their study’s findings, if they wish.

Is there any cost to join the LIVES Panel?

No. There is no cost for participants to join the LIVES Panel or receive invitations to take part in research.

Will I be paid for taking part in research?

The LIVES Panel does not provide payment. However, some studies may offer monetary or other form of reimbursement for your time (e.g. gift vouchers). This will depend on the specific study. Details about payment will be clearly outlined in any study invitation we contact you about.

Does the LIVES Panel have ethics approval?

Yes. The LIVES Panel has been approved by the UNSW Human Research Ethics Committee (iRECS9468). More detail is available here.

How will my information be stored?

Your information is stored securely on password protected systems at the University of New South Wales (UNSW). We only collect the minimum information needed to contact you about relevant studies, and your details are not shared with researchers or anyone without your consent and until you choose to contact them directly.

Can I refer other people I know with lived experience to join the LIVES Panel?

Yes, absolutely. If they are a person with lived experience of blood-borne viruses, are over 18 years of age and live in Australia (including citizens and non-citizens, regardless of visa status) we are more than happy for them to register with LIVES.