the problem
Most research is conducted within health systems, yet approximately 70% of people with an eating disorder are not engaged within the health system [9], so their diverse lived experiences may not be contributing to the body of knowledge informing research, policy, and practice.
the solution
Using genuine co-design principals and digital innovation, a Lived Experience Lifetime Survey (livED) will provide an inclusive and democratic space for anyone with a lived or living experience to contribute to research and data collection on their terms. The survey will collect information to help us better understand illness, carer and financial burden, treatment and research gaps and quality of life over the illness journey.
about livED
It’s time to fill the gaps in awareness and understanding. Research into lived and living experiences of eating disorders can take a limited view of individual stories and situations where people have to fit into the research rather than the research being built around people. The livED project aims to change that.
livED is a place where anyone who has ever experienced body image, eating or exercise concerns, anyone who has been diagnosed with an eating disorder or anyone who has a lived experience but has never shared it, can contribute to research. Contributions can be as individual as the person with the choice of journal entries, short responses, recordings, image uploads or health measures.
livED is the first of its kind in mental health research, co-designed by lived experience, clinical and digital experts uniquely developed to allow people to share their stories, their way, with the overall objective to improve and diversify the understanding of eating disorders within the community and to inform health system approaches.
“Engaging the voice of lived experience in research is crucial for engagement, diversity and quality of our work. We continually strive to find ways to offer people with lived experience the opportunity to participate in meaningful research and manage their own narratives. This model fits with the growing body of literature supporting the value of understanding people’s perspectives of their treatment experience to inform clinical practice and research.”
Dr Jane Miskovic-Wheatley, Research Stream Lead, InsideOut Institute
9. Miskovic-Wheatley J, Koreshe E, Kim M, Simeone R, Maguire S. The impact of the COVID-19 pandemic and associated public health response on people with eating disorder symptomatology: an Australian study. J Eat Disord. 2022 Jan 17;10(1):9. https://doi.org/10.1186/s40337-021-00527-0
Using co-design principles, development of a digital continuous lived experience lifetime survey (livED) to ensure individual’s experiences of illness, treatment and quality of life are integrated into mainstream understanding.
our aims
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To establish digital capability for continuously engaging with people with eating disorders, their family and carers
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Identify and measure personal experiences of illness and care, quality of life and costs not readily available in administrative health datasets
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Create a direct mechanism for continuous engagement and data collection with users of the system to track their illness and treatment journeys and outcomes