A new commentary published in the Journal of Eating Disorders argues that the growing presence of Peer Researchers—people with lived or living experience of eating disorders embedded as members of research teams—has the potential to reshape how knowledge in the field is produced, but only if the structural, cultural, and epistemic conditions surrounding their participation are fundamentally reformed. The paper, authored by a team of researchers who themselves occupy a range of Peer and lived experience roles, offers one of the most sustained critical examinations to date of how these roles operate within a field marked by stigma, contested recovery narratives, and chronic under-resourcing.

Across mental health research, involvement of people with lived experience has expanded considerably over the past two decades. A substantial body of literature suggests that meaningful involvement can broaden research agendas, surface neglected priorities, challenge deficit-based framings, and produce knowledge more closely attuned to the realities of care and recovery. Co-produced approaches have been associated with improvements in the relevance, ethical quality, and social legitimacy of research, and they challenge long-standing hierarchies between professional and experiential forms of knowledge. Peer Researchers sit at the sharp end of this movement: rather than serving only as participants or external advisors, they help shape research questions, study design, recruitment, data generation, analysis, interpretation, dissemination, and leadership. In principle, this functions as a structural intervention within research systems, redistributing authority over who is considered capable of producing knowledge.

Yet the co-production literature also documents serious risks when involvement is poorly resourced or weakly embedded within institutions. Tokenism, stigmatisation, unequal power relations, emotional labour, exploitation, and involvement that remains procedural rather than substantive are all recurrent concerns. A recent scoping review of lived experience co-design in eating disorder research identified 76 studies but found substantial variation in how lived experience was incorporated, ranging from opportunistic consultation to full integration across the project lifecycle. Methodological reporting was often limited and inconsistent, with many studies stating that lived experience had been included while providing little detail on roles, processes, or actual influence on research decisions. The mere presence of lived experience within a project, the authors argue, reveals little about the authority afforded to contributors or whether their knowledge altered the research at all.

The commentary identifies five connected domains in which challenges commonly arise: recruitment and representation; trauma, stigma, and welfare; power-sharing and decision-making; training and career development; and structural resourcing. These areas overlap in practice—recruitment is shaped by who can afford to participate, welfare by how workloads are organised, power-sharing by when Peer Researchers enter a project, and career progression by whether institutions invest in sustained rather than episodic involvement. In each domain, the authors pair a description of the problem with practical suggestions for more ethical and meaningful participation.

Recruitment emerges as an early site at which inclusion and legitimacy are actively shaped. Opportunities often favour individuals who meet conventional definitions of recovery, are already connected to research networks, or hold formal diagnoses. Self-selection processes may privilege those with stable health, financial security, and confidence in professional environments, excluding people whose insights are valuable but who are distant from services, mistrust healthcare systems because of previous trauma, or fall outside dominant stereotypes of who develops an eating disorder. This compounds existing inequities: racialised communities, LGBTQ+ people, men, disabled and neurodivergent people, people in larger bodies, and older people may all be excluded when their experiences do not align with the field’s narrow historical image. The authors also highlight the representational burden placed on a sole Peer Researcher expected to speak for an entire community, when experiential expertise is inherently situated and plural. Suggested remedies include recruiting beyond specialist services, involving lived experience collaborators in designing recruitment materials and selection criteria, and funding multiple contributors or community partnerships where diverse insight is sought.

Trauma, stigma, and welfare present a second cluster of difficulties. Lived experience accounts consistently document services experienced as stigmatising or disbelieving, with people described as manipulative, attention-seeking, or insufficiently motivated—dynamics that constitute forms of epistemic injustice, shaping whose accounts are treated as credible. For Peer Researchers, the perspectives for which they are invited into research may remain subtly mistrusted, reframed as pathology, or contained within it. Emotional labour is central rather than incidental to this work, which can involve engaging with accounts of illness, treatment, and recovery that resonate with or unsettle one’s own history. Eating disorders are often marked by fluctuation, relapse, and long-term management rather than a simple transition from illness to wellness, yet research environments may assume contributors are either fully recovered or too unwell to participate. The authors advocate trauma-informed participatory frameworks organised around anticipation, flexibility, reflection, safety, and relational trust: discussing risks in advance, allowing people to opt in or out of particular tasks, adapting meeting schedules, and making explicit that stepping back from a task will not be interpreted as failure. Crucially, they stress that risk should be assessed in relation to specific tasks rather than attached to lived experience as a general category, and that protective exclusion—however well-intentioned—can reproduce the very judgements about competence that Peer Research is meant to challenge.

Power-sharing is perhaps the most consequential domain. Lived experience may be welcomed mainly in forms that fit established project structures, such as personal reflection or validation of decisions made elsewhere, while Peer Researchers are kept out of the parts of the process where concepts are defined, assumptions challenged, and interpretations negotiated. Concerns about vulnerability or readiness may steer them away from work deemed too sensitive or technical, narrowing their roles and preserving existing distributions of authority. The authors argue that clearer differentiation between forms of expertise can strengthen collaboration: statistical modelling, trial design, data governance, qualitative interpretation, experiential understanding, and ethical judgement each involve distinct competences, and technical skill in one domain does not confer exclusive authority over the framing, interpretation, or lived relevance of research. Practical steps include agreeing decision-making processes at the outset, creating routes for disagreement, documenting how lived experience input influenced the project, and being transparent when a decision cannot be shared for legal or governance reasons. The clearest marker of genuine collaboration, they suggest, is whether lived experience input can change the work itself.

Training and career development compound these problems. Many Peer Researchers remain employed on fixed-term or consultancy arrangements tied to individual studies, limiting opportunities to develop sustained expertise or academic careers. Training within projects may focus narrowly on enabling contributors to support pre-existing designs, while researchers without lived experience receive little preparation in the relational and ethical demands of co-production. The authors call for reciprocal but not symmetrical development: Peer Researchers gaining access to methodological and institutional knowledge, and established researchers developing skills in accessibility, power-sharing, and epistemic reflexivity. Sustainable roles require clear employment structures, fair compensation, appropriate authorship, and progression routes into substantive posts, fellowships, and leadership—while recognising that some Peer Researchers may prefer portfolio or community-based forms of work.

Underlying all of this is the structural context: eating disorder research is a comparatively small and under-resourced field, with investment disproportionately low relative to disease burden and mortality. Short project cycles and competitive grant processes mean Peer Researchers are often involved only after funding is secured and key decisions have been made, creating a genuine ethical dilemma for researchers who would otherwise involve them earlier. The authors propose structural solutions including pre-award involvement funds, institutional seed funding, and funding mechanisms that allow project designs to evolve throughout the lifecycle. They also examine how ethics and governance frameworks, developed primarily for research participants, may be misapplied to Peer Researchers in ways that overemphasise vulnerability, and how payment delays, benefit restrictions, and insecure contracts directly shape who can afford to contribute. Responsibility for change, they conclude, is shared across research teams, institutions, funders, ethics bodies, and the wider field—not individuals alone.

The commentary’s synthesising argument is that meaningful Peer Research depends not simply on the presence of people with lived experience within research teams, but on the conditions under which their expertise enters, influences, and is sustained within research. Differences in training and formal responsibility will remain, but ethical collaboration requires that these differences do not become a general hierarchy through which experiential knowledge is routinely subordinated. The possibility of distress or fluctuating health, the authors insist, should prompt responsive support and flexibility rather than exclusion as the default response. If the field can deliver broader recruitment, paid involvement during project development, reciprocal training, sustainable career pathways, proportionate governance, and transparent reporting of how lived experience has changed the work, Peer Researchers could move from being rhetorically welcomed to genuinely consequential contributors—with corresponding gains in the quality, relevance, and ethical integrity of eating disorder research itself.

Subject of Research: The role and integration of Peer Researchers with lived experience in eating disorder research

Article Title: Reflections on the role of Peer Researchers in eating disorders: identifying challenges, best practices, and future directions

Article References: Downs, J., Maloney, E., Carnegie, A., Thomas, K. S., & Chapman, L. (2026). Reflections on the role of Peer Researchers in eating disorders: identifying challenges, best practices, and future directions. Journal of Eating Disorders, 14(1), Article 238. https://doi.org/10.1186/s40337-026-01757-w

Image Credits: AI Generated

DOI: 10.1186/s40337-026-01757-w

Keywords: eating disorders, peer research, lived experience, co-production, epistemic justice, participatory research, research ethics, trauma-informed practice, power-sharing, mental health research, research funding, stigma