Enriching a randomized controlled treatment trial for anorexia nervosa by lived experience-Chances and effects of a lived experience council in the SUSTAIN study

Background: The development and advancement of treatment and care options is one priority in the field of eating disorders. The inclusion of persons with lived experience with eating disorders into clinical research could enrich and accelerate this endeavor, as they can add different perspectives on the disease and its treatment. Although lived experience perspectives are increasingly part of eating disorder research, they have not been widely or structurally implemented into clinical trials and there is limited information on the practice of participatory research, its framework and consequences.

Aims: The present work outlines the participatory collaboration with a lived experience council in the randomized controlled treatment trial SUSTAIN.

Materials & methods: The manuscript is a participatory publication co-written by individuals with lived experience with anorexia nervosa and eating disorder researchers.

Results: We report on motivations for this approach, our collaboration principles, structures and shared experience of working together in the trial, the potential burdens and benefits related to participation for people with lived experience.

Discussion: We outline future directions and perspectives to integrate a participatory framework into clinical eating disorder research.

Conclusion: The involvement of people with experiential knowledge is complex, but possible in clinical research on ED and bears huge potential for the development of more effective care.

Public significance: Incorporating perspectives of people with lived experience into a participatory framework of mental health research bears huge potential on a societal level. This includes more relevant research topics and designs, more tailored and effective interventions, and facilitated implementation, as well as dissemination, higher credibility, destigmatization of mental illness, and patient empowerment. Participatory clinical research, however, needs structural anchorage within science and society.