Integrating lived experience in decision-making processes within research and policy making is an evolving area of practice in design. Participatory Design offers an approach prioritising authentic engagement and agency over knowledge in research (Dunn, Cruickshank, and Coupe 2023; Hodson, Svanda, and Dadashi 2023); and integrating lived experience expertise within policy design (Oakley and Robertson 2023). This also aligns with recognition of ‘pure or tacit knowledge’ as integral to decision-making processes (Smith-Merry 2020), especially within the practice of care (Reinders 2010). In this context, the power dynamics between researchers and lived experience partners (Green and Johns 2019) requires further discussion, to define ways to support genuine participation that values mutual learning between research knowledge and lived experience expertise.

The paper discusses the role and contributions of design to an ongoing research programme – EDIFY (Eating Disorders: Delineating illness and recovery trajectories to inform personalised prevention and early intervention in young people), which aims to transform the way eating disorders are understood and treated by working directly with young people and uses an interdisciplinary approach. A dedicated lived experience workstream – ‘LENS’, focuses specifically on understanding experiences of young people from diverse, underrepresented, and ‘at risk’ groups. The objective is to co-create a range of stories from lived experience and develop an inclusive language for how we talk about and raise awareness of eating disorders. The work builds on a conceptual framework for participatory design in sensitive contexts (Raman and French 2022), to enable genuine participation from young people with lived experience. This paper specifically focuses on two facets of designing participation from young people with lived experience: a participatory engagement tool to foreground lived experience expertise of young people to challenge stereotypes and shift existing narratives around eating disorders; and the role of experts by lived experience as peer researchers to enable a shift in how future priorities for eating disorders research, practice and policy are developed. We further reflect on the design of participation when working with young people with lived experience as part of a research team, and discuss how power will be made visible, (re)framed and enacted in this context.

Through this paper and participation at the conference, we invite further dialogue on working with young people as peer researchers and ways in which participatory design methods foregrounding lived experience could challenge dominant narratives, focusing on diversity and inclusion.