Partnering with people with lived experience in eating disorder research: conceptual and practical considerations

Across medical and mental health research, lived experience (LE) collaboration and partnership is increasingly being prioritised and embedded into research methods and considered as an essential ethical approach. In eating disorder (ED) research, however, LE involvement is still emerging, and ED researchers have identified a need for guidance on ethical collaboration with people with LE. Written by a team of LE researchers and advocates, this article outlines core principles for ethical and meaningful partnership for people with ED in research, including: (1) Recognise lived experience as expertise, (2) Share power and decision-making, (3) Support autonomy, readiness, and dignity of risk, (4) Clarify roles, expectations, and disclosure choices, (5) Provide fair remuneration, authorship, and recognition, (6) Build emotionally safe and sustainable ways of working, (7) Practice reflexivity and transparency, (8) Ensure mutual benefit and capacity building. Conceptual clarification is also provided regarding types of LE involvement in ED research, with examples (LE-led research, co-production, co-design, consultation). Using the core principles, practical guidance is provided for clarifying roles and expectations, supporting disclosure choices, planning remuneration and authorship, developing emotionally safe ways of working, and addressing institutional barriers to meaningful partnership. This article aims to support the ED research community in shared learning and growth opportunities for ethical collaboration with people with LE in ED research.