Partnering with people with lived experience in eating disorder research: conceptual and practical considerations
Journal of Eating Disorders, Vol.14(1), pp.1-20
2026
: 42271464
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.
- Partnering with people with lived experience in eating disorder research: conceptual and practical considerations
- Rosiel Elwyn (Corresponding Author) - University of the Sunshine CoastKai Schweizer (Author) - The University of Western AustraliaLaurence Cobbaert (Author) - UNSW SydneyAlana Gall (Author) - Southern Cross UniversityZyana Gall (Author) - Southern Cross UniversityMia L Pellizzer (Author) - Flinders UniversityJeannie Park (Author) - Rabbits in Submarines Collective (South Korea)Matthew Jackman (Author) - The University of Sydney
- Journal of Eating Disorders, Vol.14(1), pp.1-20
- BioMed Central Ltd.
- 2026
- 10.1186/s40337-026-01670-2
- 2050-2974
- 42271464
- This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.
- No datasets were generated or analysed during the current study.
- Thompson Institute
- English
- 991236002102621
- Journal article
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