Scientists Redesign Eating Disorder Trials by Sharing Power with Patients

Clinical trials for eating disorders have long been designed by researchers, funded by institutions, and only later explained to the very people they are meant to help. A new perspective article published in Nature Mental Health argues that this model is failing on its own terms, and it lays out a detailed alternative: a full-cycle approach in which people with lived and living experience of eating disorders help steer every stage of trial research, from the first framing of the research question to the final dissemination of results. The work, led by Antonio Verdejo-Garcia of Monash University and Sarah Maguire of the InsideOut Institute for Eating Disorders at the University of Sydney, together with a large multidisciplinary team based at the Australian Eating Disorders Research and Translation Centre, is one of the most concrete attempts yet to turn the buzzword of co-production into an operational blueprint.

The central claim of the paper is that co-production is not a courtesy add-on to rigorous science but a structural feature that changes what gets studied and how. In eating disorders, the authors argue, the gap between traditional academic expertise and lived experience is particularly consequential. These are complex, heterogeneous conditions in which treatment engagement, therapeutic alliance, and the lived meaning of recovery are difficult to capture with conventional outcome measures alone. When trial designs are drafted without the people who will live through the interventions, studies can end up asking questions that matter less to patients, using outcome measures that feel irrelevant or even harmful, and recruiting through channels that people with eating disorders do not trust.

What distinguishes this article from much of the existing literature on patient and public involvement is its insistence on specificity. Rather than offering general principles, the authors detail strategies and tools for shared decision-making across the entire research cycle. A key illustration in the paper describes the decision-making process that led to the selection of a trial design: researchers and people with lived and living experience shared resources through a structured pros-and-cons analysis, and shared power through an equal voice in the final decision. That pairing, of shared information and shared authority, is presented as the technical core of genuine co-production. Without shared resources, lived-experience partners are consulted but cannot meaningfully evaluate options; without shared power, their input can be overruled at the last moment by conventional hierarchies.

The authorship itself embodies the model. The team includes clinicians and neuroscientists such as Stephen Touyz, Claire Foldi, and Elizabeth Rieger, occupational therapists and health services researchers including Genevieve Pepin, Sanna Barrand, Leah Brennan, and Anita Raspovic, and lived-experience leaders such as Shannon Calvert, an independent lived-experience educator and advisor, Sam Ikin, Romany McGuffog, and Julian Robinson. It also includes Leilani Darwin of First Nations Co., reflecting an explicit commitment to cultural as well as experiential diversity in research governance. The authors write from the Australian Eating Disorders Research and Translation Centre, a national body created to accelerate the movement of evidence into practice, and the article reads as an internal report of what that infrastructure has learned about making collaboration real rather than symbolic.

The timing of the paper is significant. Eating disorders affect millions of people worldwide and carry among the highest mortality rates of any psychiatric illness, yet the evidence base for many treatments remains surprisingly thin. Recent systematic reviews and trial registries have highlighted persistent problems: small samples, high dropout, inconsistent outcome measures, and interventions that patients describe as misaligned with their needs. At the same time, funding bodies including the National Institute for Health and Care Research in the United Kingdom have issued formal guidance on co-producing research projects, signalling that the era in which patient involvement could be a tokenistic paragraph in a grant application is drawing to a close. The Australian team’s contribution is to ask what it would actually take, method by method, to satisfy that ambition in the demanding context of a clinical trial.

Technically, the full-cycle approach treats co-production as a set of decision points distributed across the trial lifecycle. Early in the cycle, lived-experience partners help define the research question, ensuring that the trial addresses outcomes that matter to patients, such as quality of life, functional recovery, and the experience of care, alongside the symptom-based measures familiar to regulators. During design, the shared pros-and-cons analysis of trial options allows both groups to weigh trade-offs: between rigorous blinding and pragmatic delivery, between intensive measurement and participant burden, between novel interventions and established ones. During conduct, co-production extends to recruitment messaging, retention strategies, and the interpretation of interim findings, areas in which people with lived experience often bring practical knowledge that statisticians and clinicians lack. Finally, at dissemination, partners help translate findings for the communities that will use them.

The article also engages honestly with the difficulties. Co-production takes time, and time is the scarcest resource in competitive research environments. It requires training on both sides: researchers must learn to share power, and lived-experience partners must be supported to engage with technical material such as effect sizes, randomisation schemes, and safety monitoring without being overwhelmed or tokenised. Payment and recognition of lived-experience contributors raise questions about equity and about the risk of creating a small class of professional patients. There are also epistemic tensions: a trial must ultimately produce a defensible answer to a specific question, and unlimited consensus-seeking can paralyse design decisions. The authors’ response is procedural rather than rhetorical, offering checklists and structured tools, including a co-production quick-start checklist developed by the Australian centre, that convert good intentions into auditable practice.

The broader significance of the paper extends beyond eating disorders. Co-production has been advocated across mental health research for years, but systematic reviews have found that reports of patient and public involvement rarely describe the methods in enough detail to be reproduced, and evaluations of its impact are sparse. By documenting a full-cycle model in a journal read by mental health methodologists, the Australian team is effectively proposing a standard of reporting: if a trial claims to be co-produced, it should be able to show where decisions were shared, what resources were made common, and how disagreements were resolved. That kind of transparency could allow the field to test, rather than assume, whether co-produced trials recruit better, retain participants longer, and produce findings that change practice.

There is also a scientific, not merely ethical, argument embedded in the approach. Eating disorders are characterised by ambivalence about treatment, shame about symptoms, and a history of feeling misunderstood by health systems, all of which affect trial participation and measured outcomes. Interventions designed with input from people who have navigated those experiences may achieve stronger engagement, more ecologically valid protocols, and outcome measures that capture genuine recovery. The authors position lived experience as a form of expertise that complements, rather than competes with, biomedicine and clinical psychology, a framing consistent with the centre’s translation mission and with growing international interest in embedding experiential knowledge in research governance.

For a field that has struggled to translate decades of research into better outcomes, the paper’s message is quietly radical: the next advance in eating disorder treatment trials may come not from a new drug or a new therapy manual, but from redesigning who holds the pen when trials are designed. The full-cycle model described by Verdejo-Garcia, Calvert, Maguire, and their colleagues offers a concrete, replicable architecture for that redesign, and its publication in a leading journal suggests that shared decision-making between researchers and people with lived experience is moving from aspiration to method. Whether the model improves trial performance will now be tested in the studies it shapes, but the standard it sets, equal voice backed by shared resources at every stage of the research cycle, is likely to influence how co-produced mental health research is planned, reported, and judged for years to come.

Subject of Research: Co-production of clinical trial research for eating disorder treatment with people who have lived experience

Article Title: A full-cycle approach for co-producing trial research for treatment of eating disorders

Article References: Verdejo-Garcia, A., Calvert, S., Pepin, G., Barrand, S., Bonfim Pacheco, L., Brennan, L., Darwin, L., Foldi, C., Ikin, S., Marks, P., McGuffog, R., Raspovic, A., Robinson, J., Rieger, E., Touyz, S., & Maguire, S. (2026). A full-cycle approach for co-producing trial research for treatment of eating disorders. Nature Mental Health. https://doi.org/10.1038/s44220-026-00734-1

Image Credits: AI Generated

DOI: 10.1038/s44220-026-00734-1

Keywords: eating disorders, co-production, clinical trial design, lived experience, patient and public engagement, mental health research, shared decision-making, research management, Nature Mental Health, Australia, treatment trials, research translation