Monash University researchers alongside lived experience experts (LEEs) have co-authored a report that provides practical strategies and recommendations to encourage meaningful LEE participation at all stages of a project. This not only enriches the quality and relevance of research outcomes but also increases the likelihood of uptake among communities and service users.
Within health, education, and social care, there is growing recognition of the need to broaden what counts as valid evidence in research, moving beyond traditional data to include the lived experiences of those directly affected by the issues being studied. Despite this, engaging LEEs often remains superficial, whereby LEEs provide limited input, rather than being included as equal contributors throughout the research process.
According to the report, VILLAGE Authentic Inclusion of Lived Experience Experts in Health and Social Care Research, lived experience refers to the expertise gained through direct, personal experience of a specific issue or system.
First author Ahlia Griffiths, from the Health and Social Care Unit at Monash University, said with the growing need to include the voice of LEEs in research it was important to share practical ways to do this. Often the responsibility was placed on LEEs to adapt and adjust to researcher and academic ways of working, and could at times be tokenistic or potentially harmful for LEEs.
"Our report aims to highlight the impact on research workings and outcomes when these often hardly reached voices are championed and embedded. LEE members offer so much to researchers by being vulnerable, offering key, often overlooked community insights, challenging the status quo, and opening researchers to new ways of thinking," Ms Griffiths said.
The report provides some of the below recommendations to consider when involving lived experience experts in health and social care research, however the researchers noted that there is no single way to work with LEEs, and in fact, the approaches and tools used should be tailored to each LEE/LEE group, each time.
Involve lived experience experts (LEEs) in the full research process, from early conceptualisation and design through to implementation and evaluation: People with lived experience are best placed to determine what research, programs and policies would benefit their community, and should be an integral part of any initiatives intended for their benefit.
Where possible, create positions for different levels of involvement that adapt to fit with LEE's other commitments: LEEs should be offered a range of flexible roles that accommodate different levels of involvement, as they may have other professional and personal responsibilities. This flexible approach is not intended to create hierarchies of participation, rather, it is designed to broaden access to a more diverse group of people by allowing them to engage in ways that suit their needs.
Understand LEEs' learning needs and learning styles, then offer support for continuing education and skill development where possible: Investing in LEE development not only builds capacity within the group but also demonstrates a commitment to valuing their expertise as evolving and professionally significant. Where possible, organisations should offer access to ongoing education and skill development, tailored to each individual's goals and areas of interest.
Co-author Professor Helen Skouteris, Head of the Health and Social Care Unit at Monash University said "Ms Griffiths and the team of LEEs she worked with drove every aspect of the report. She is learning, and will continue to learn, by privileging their voices. And for that learning journey she is deeply grateful."
Lived experience expert, Shokria said, "Coming from a CALD and refugee background I bring perspectives that are often overlooked in health community research. My voice is important because it reflects real life challenges and strength, not just statistics. The VILLAGE has always supported and valued every bit of work I do, and that gives me the confidence to share openly. I have a lot in my mind and heart to contribute, and when I speak, I feel heard and that 'wow' moment when people really listen reminds me why my voice matters and why it can help shape better health outcomes for our communities."
Lived experience expert, Tim said, "I have seen first-hand the extraordinary success that is possible from cooperation between researchers and people in the community with a need for change, together with the Health and Social Care Unit at Monash."
