To a crowd of attentive early and mid-career researchers, Ahlia Griffiths and Tim Moss shared their journey of setting up a lived experience expert network.

Ahlia, a Lived Experience Coordinator in Monash University’s Health and Social Care Unit, was tasked with the job of finding and bringing together parents and carers of children aged 0-17, to provide researchers with real world insight into what they and their communities needed to receive equitable health, education and social services. Ahlia champions the connection between researcher and Lived Experience Experts (LEEs), and how authentic collaboration can only strengthen research outcomes.

Tim was one of the first to join the network, eager to get involved in a group that would inform research from inception, not as an afterthought. Tim said, “the idea of a network of people with lived experience being brought in to contribute to research from the outset was novel and intriguing”.

The workshop provided researchers with an insight into the practical steps Ahlia and a group of Monash researchers and professional staff took to find lived experience experts across Australia. By connecting with local and national community groups, a 10-strong group came together to set their own tone for foundational documents such as a Terms of Reference, Group Agreement and the naming of the network to VILLAGE – Valued Individuals Living and Learning About Growing Equity.

The VILLAGE published a report this year, Authentic Inclusion of Lived Experience Experts in Health and Social Care Research, to support researchers or organisations wishing to partner with lived experience experts.

“It was so important for our VILLAGE members to share how we have done this incredible work, with hopes to share how this work can be easily implemented,” Ahlia said. “We see such richness in sharing our way of working.”

The report and the conference workshop both detail steps that were taken to set up appropriate remuneration systems, and create and maintain a safe space for lived experience experts to share their knowledge. Ahlia and Tim explained why partnering with LEEs from the outset of research conception is vital to ensure outcomes reflect the needs of the communities they are designed for. “If involvement with people who have lived experience is not authentic, the full benefits can’t be realised”, Tim said.

Read the report and learn more about VILLAGE and the research its members are informing.

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