Introducing the LIVES Panel – a national platform to support lived experience research
There’s growing recognition that people affected by blood-borne viruses should play a central, meaningful role in shaping the knowledge, priorities and decisions that influence their lives. Our national strategies emphasise this, and it is increasingly recognised across research, service, law, policy and community spheres.
This reflects a broader understanding that people with lived experience – of blood-borne viruses, but also of many other facets of experience –hold vital, firsthand knowledge about how legal, social and health systems operate in practice. They know how stigma, discrimination and structural barriers intervene in access to care, where services are supportive and where they are lacking, and what changes and reforms could make a difference.
Despite the richness of this knowledge, opportunities to participate in research are often limited. People who wish to contribute do not always have clear pathways to do so, and many are unsure how to become involved. Participation in research studies often depends on one-off recruitment processes; and in many cases community organisations play a key role in facilitating recruitment, which can place additional pressure on already stretched services.
Finding participants can also be challenging for researchers. It can be costly and time consuming, and many projects often struggle to meet their recruitment targets. This is particularly true of so-called ‘hard-to-reach’ populations, including people with lived experience of blood-borne viruses, who have historically been underrepresented in research.
What is a lived experience panel?
To help address these challenges, Health+Law has established the LIVES Panel. Managed by research staff at UNSW, the panel is a national pool of research participants that has been deliberately established to support community informed research on the issues impacting people affected by blood-borne viruses.
The panel is a simple and ethical way for people with lived experience to hear about opportunities to take part in research studies that concern them and their communities, while ensuring they remain in control of how and when they choose to participate. The panel also helps researchers connect with participants in a way that is consistent, transparent and respectful of community priorities.
How can people participate?
The LIVES Panel is open to people who meet all three of the following criteria:
Are aged 18 years or over
Live in Australia (including citizens and non-citizens, regardless of visa status)
Have lived experience of HIV, hepatitis B, or hepatitis C.
‘Lived experience’ includes:
People currently living with a blood-borne virus
People who have lived with a blood-borne virus in the past
Carers, close family members, or peer workers supporting someone living with a blood-borne virus
People working in health, legal or social service roles that support people and communities affected by blood-borne viruses.
Registration to the panel is a one-off process that takes around five minutes. It involves completing a short form with a small number of personal, non-identifiable information and a preferred method of contact. This information is stored securely on UNSW systems in a password-protected database.
The LIVES Panel operates under a double opt-in model. First, participants consent to join the panel. And then, when studies become available that match their profile, they might get contacted and can decide whether they wish to take part. More information on this process can be found on the participant information form and in our participant ‘Frequently Asked Questions’.
How can researchers access the LIVES Panel to recruit participants?
Researchers interested in recruiting participants through the panel must first obtain approval from a recognised human research ethics committee for their study. Once ethics approval has been granted and the study has been reviewed by the LIVES team, we will identify participants who may be eligible based on the information they provided when registering. Prospective participants will then receive information about the study and an invitation to take part.
At no stage do we share the contact details of LIVES Panel participants directly with researchers. Participants remain in control of whether they wish to respond to a study invitation or take part in a particular study.
To read more information for researchers or to submit a request to access the panel, click here. A detailed set of FAQs for researchers are also available here.
A collaborative and community informed approach
The development of the LIVES Panel is guided by consultation with members of community organisations working with people affected by blood-borne viruses across Australia. These partnerships are central to the panel’s design and governance, and they help ensure that recruitment of people with lived experience aligns with community priorities.
LIVES draws on lessons learned from previous research, including Health+Law’s national Legal Needs Study (LeNS), which recruited one of the largest ever cohorts of people living with blood-borne viruses for socio-legal research in Australia.
Interested in joining or finding out more?
Recruitment for the LIVES Panel is happening now. To register or find out more click here.