Learning From Those Who Have Lived: A Scoping Review Exploring the Involvement of Lived Experience Co-Design in Eating Disorder Research Methodologies

Objective

There is a growing demand in health research and policy to meaningfully involve people with lived experience in co-creating research and treatment services, especially in eating disorders. Despite decades of research into risk, origin, onset, progression, and intervention, significant knowledge gaps remain. The aim of this review was to investigate evidence in the published literature of lived experience consideration and integration in eating disorder research methodology to date.

Method

A scoping review methodology was used to review research across six databases. Lived experience was engaged in research ideation, search strategy, and analysis.

Results

The search generated over 6553 articles with 76 meeting the inclusion criteria. There has been growth of lived experience research inclusion over the past 5 years, especially in the United Kingdom and Australia. There was a wide range of lived experience engagement from one-off opportunistic engagement to full project integration and substantial variety in methodological reporting, including terminology, detail, and knowledge-sharing to advance the field. Researcher reflexivity reporting was rare and lived experience descriptions were sometimes limited by methodology (such as anonymous surveys), compromising analysis of representativeness.

Discussion

While research incorporating lived experience is increasing, meaningful engagement varies widely, detailed methodological descriptions are lacking, and guidance on practical implementation is limited. Prioritizing time, resources, and trust-building in lived experience research and amplifying the value of seeking and reporting such efforts in grant calls and published research has the potential to address knowledge gaps and improve outcomes.