Researchers' Perspectives and Guidelines on the Reporting of Lived Experience Involvement in Eating Disorder Research

There is an increasing trend towards embedding consumer and community involvement in all health and medical research. The Executive Committee of the International Journal of Eating Disorders (IJED) disseminated a survey for eating disorder researchers investigating their practices and perspectives regarding Patient and Public Involvement (PPI) in research, with the goal of informing our procedures in future.

A survey was distributed globally via eating disorder organizations, professional networks, and individual researchers. Researchers (N = 119) of various career stages completed the survey.

Three quarters of the researchers had consulted people with lived experience to inform their research; 45% said that they employed lived experience and/or peer researchers across all stages of their research, and 75% viewed PPI as improving the quality, relevance, feasibility, adoption, or implementation of research. Concerns were expressed about the challenges associated with PPI, including cost, time, expertise, disclosure of lived experience status, the need to maintain robust scientific principles, concern about the validity of results, and potential harm to the person with lived experience. Most did not want disclosure of PPI to be mandatory or to impact the review process.

These insights informed the development of an approach to recognizing the involvement of PPI in our publishing. Rather than an obligatory statement, IJED encourages use of PPI and disclosures, with inclusion of a description and implications for the interpretation of the research detailed in manuscripts.