Let's Co! The how‐to of working within a co‐production framework to devise, design and execute collaborative multisite clinical trials

Abstract

Objectives

To document the steps undertaken in a full collaborative co‐production design process undertaken between a group of lived experience, clinical and research collaborators to determine the selection and design of three large‐scale, multisite, clinically focused studies (including two clinical trials) targeting eating disorders. This work formed part of a grant supporting the development of a National Centre for Research and Translation in Eating Disorders (AEDRTC) funded by the Australian Government. We highlight the phases and activities, principles and values that informed practice – as has been called for recently within the scientific community, in addition to emerging themes and lessons learnt. The paper aimed to contribute to the limited body of published literature on practical approaches to co‐production in large‐scale research studies and teams.

Methods

We undertook a 1‐year full co‐production process to collaboratively ideate, choose and design the research studies to be funded and conducted by a nationally‐funded centre for research in eating disorders.

Results and Conclusion

This manuscript documents all the key stages of the co‐production process for the shared agenda setting, choice and design of the three complex research studies, including the establishment of governance and structure, novel IP clauses, processes and principles of shared ideation and collaborative design. We also discuss natural push and pull factors creating tension in a co‐production process, reflecting on themes and learnings.

Practitioner points.

• To develop innovative psycho‐biological understanding and treatments for eating disorders, a full co‐production agenda with lived experience experts was developed including shared priority setting, research questions, targets and design.

• Full co‐production practice which includes all decision‐making, not merely consultation with lived experience, remains rare in science.

• Co‐production with experts with lived experience takes time and the development of additional processes within the research pipeline to support and maximize the benefit of incorporating this expertise within the research team.

• The inclusion of lived experience throughout the process expanded the scope, ambition, relevance and sophistication of the research.

INTRODUCTION

Co‐production in mental health is about progression towards the transformation of power and control. It requires thinking about people, power, partnerships, resources and risk in ways that are very different to what has gone before in mental health services.

–National Mental Health Consumer and Carer Forum (2025)

Moving beyond legacy models for participation in research presents challenges for both well‐established and hierarchical research structures and systems, and the individuals contributing to collaborative research design and implementation. All collaborative research endeavours—even those that only include scientific expertise—that aim to integrate and synthesize differing perspectives and knowledge systems struggle with process, power, knowledge synthesis and consensus building. However, the integration of lived and living experience (LLE) knowledge into all stages of the research cycle introduces additional complexities and has become a focus of increasing deliberation and discussion (Nature, ²⁰²¹; Redman et al., ²⁰²¹; Rycroft‐Malone et al., ²⁰¹⁶; Smith et al., ²⁰²²; Turnhout et al., ²⁰²⁰; Verschuere et al., ²⁰¹²). The benefits of embedding LLE and other forms of diverse knowledge into research teams are well documented. These include enhanced research quality (Heaton et al., 2016), solutions applicable to the real world (Donetto et al., 2015), increased impact (Watson et al., 2023), fairer and more engaging processes (Bell et al., 2023) and the development of more meaningful outcomes (Tallon et al., 2000). In health‐related research, the stakes for people with LLE, and for those who care for and support them, are often deeply personal, and at times life‐defining. They are not only directly impacted by the outcomes of research, but also by how research questions are chosen, how findings are interpreted and how those findings are applied in real‐world care settings. The meaningful involvement of individuals with LLE in the design, testing and translation of health innovations is therefore not only beneficial but also ethically and practically imperative (Lignou et al., 2019). Despite this, few resources in the academic literature offer guidance on ‘how‐to’ co‐produce research in practice (Benz et al., 2024), in particular inclusion in all stages of research including idea generation and agenda setting. As a result, many researchers remain uncertain about how to embed co‐production meaningfully and are insufficiently equipped to shift established research processes.

Co‐production is a democratic approach to research that intentionally disrupts traditional hierarchies by centring the knowledge and experiences of people and communities most directly impacted by the issue being studied (Bellingham et al., 2022). While integrative approaches to knowledge generation are integral in many cultures, including First Nations (Bartlett, 2005), co‐production represents a significant cultural and practical shift in Western health and medical research, and is increasingly required in funding applications (National Health and Medical Research Council, 2016; National Institute for Health and Care Research, ²⁰²⁵), scientific publishing (The Lancet Rheumatology, 2025), and policy‐making (Department of the Premier and Cabinet, 2025; Victorian Government, ²⁰²³). In health research, co‐production brings together teams with diverse skills and experiences, including people with LLE, clinical experience and academic knowledge, to work in partnership, sharing power, to build each other's capacity to generate more inclusive and responsive solutions to complex health challenges (Peters et al., 2024; Slattery et al., ²⁰²⁰). In some cases, ‘positive discrimination’ (or the elevation and privileging of the perspectives of people with LLE) may be necessary to actively counter historical marginalization and support more equitable contributions to research (Bellingham et al., 2022). Rather than prescribing a fixed model or methodology, co‐production is best understood as an approach (Bellingham et al., 2022). It positions people with LLE—including those who support and care for them—as co‐researchers, collaborating alongside clinicians and academic researchers. Together, they share responsibility for shaping all stages of the research cycle, from idea generation and priority setting to method selection, analysis and translation (Roper et al., 2018). This does not imply that research and technical expertise do not guide and lead those stages of research focused on methodological precision, data collection, data analysis and scientific publishing, but rather that all research collaborators are engaged at all stages to contribute to and shape the research.

Co‐production intends to shift from seeking the involvement of community members, including people with LLE and practice‐based professionals (e.g., health professionals, clinicians or researchers) only after an agenda has been set, to fostering collective leadership from the outset. This means engaging affected communities and collaborators in the initial thinking and priority‐setting processes, as well as all subsequent stages of research (Crowe et al., 2015; Roper et al., ²⁰¹⁸). This approach aimed to centre those who have historically been excluded from research and knowledge production, often resulting in stigma, harms or invisibility (Pantazakos & Arnaud, 2024), sending ‘an implicit message that our insights are not valid, valued, or credible—and that we are not capable of contributing meaningfully’ (LLE expert). It also supports the development of research frameworks that prioritize ‘do no harm’ principles, reduce the risk of iatrogenic trauma, and enhance the quality of interpretation and translation (Chalmers et al., 2014).

In 2022, the Australian Government Department of Health and Aged Care committed AU$13 million under the National Leadership in Mental Health program to a public competitive grant process to fund a national research centre for driving research innovation in the field of eating disorders and supporting the translation of evidence‐based interventions into practice (Australian Government Department of Health, Disability and Ageing, 2022). The Australian Eating Disorder Research and Translation Centre (AEDRTC/the Centre) was established through a national consortium, with the InsideOut Institute for Eating Disorders at the University of Sydney as the lead. The Centre comprises a national consortium of partners, including a First Nations lead, a Lived Experience Lead, a number of Australian‐based research leads, a National Technical Advisory Group and an International Expert Advisory Group. Its Governing council is led by an independent chair and includes First Nations and Lived Experience leadership.

Earmarked from the Centre funding package was AU$6mil (approx. US$3.9mil) for the funding of key research studies (‘Signature Studies’). The Consortium embarked on a collaborative research agenda to determine the number, nature and specifics of the Signature Studies. At the time, few published resources existed to guide the practical implementation of co‐production with inclusion at all stages, including research agenda setting and ideation. As such, the methods used were themselves evolving—co‐developed by collaborators in response to real‐time challenges and learning. This resulted in a process that had multi‐level governance and principles in place from the outset and was also organic and adaptive, shaped in particular by the contributions and insights from people with LLE and refined throughout the stages of ideation, study design and methodology development. The process was grounded in established co‐production principles and emerging best practices (all of which are references in the Quickstart Guide described below (Australian Eating Disorders Research and Translation Centre, ^2025a)).

The purpose of this paper was to document the full, collaborative co‐production design process undertaken for these studies, highlighting the principles and values that informed practice—as has been called for recently within the scientific community (Masterson et al., 2022). It includes reflections on the process, emerging themes and key lessons learnt. The paper aimed to contribute to the limited body of published literature on practical approaches to co‐production in large‐scale research studies (Benz et al., 2024).

CO‐PRODUCTION FRAMEWORK AND GUIDING PRINCIPLES

Centre structure and governance

LLE leadership, input and diversity of knowledge were purposefully embedded across all structures of the Centre from the earliest stages of the grant application process through to governance establishment. During the grant writing phase, a consortium of research, clinical and LLE collaborators was assembled to bring together the knowledge and expertise required to support a collaborative co‐production agenda. This included a broad range of multi‐disciplinary, LLE and research expertise.

As depicted in Figure 1, the Governing Council (GC) was established at the inception of the Centre as its highest decision‐making body and has oversight of all centre activities and outputs, including the signature research studies. From formation, the council included LLE leadership, spanning personal and caring roles, Aboriginal and Torres Strait Islander LLE as well as community and peer‐based knowledge. The Centre Executive Working Party, which drives, plans and monitors all programs, work streams and activities, comprises all the chief investigators for the centre, including the researcher leads (SM, LB, AVG, LR, CF, ST), the two Lived Experience and Co‐Production Program leads (SC and GP) and the lead of the Aboriginal and Torres Strait Islander Program (LD), along with the Centre's Chief Operating Officer (PM).

FIGURE 1.

Centre structure and governance.

The Lived Experience and Co‐production Program of the centre was established at the outset (led by SC and GP with postdoctoral researcher SB) and is embedded across all Centre work streams and activities. SC (LLE Lead) and GP (Research Lead) brought complementary skillsets and shared extensive experience in co‐production and LLE partnerships. Together, they worked with the members of the centre executive to shape and coordinate the Centre's co‐production agenda and research processes. This core structure ensures that LLE knowledge and co‐production principles are interwoven across the Centre's work streams (Workforce, Research Engagement and Capacity Development, National Network, Research Translation and the First Nations program) and activities. It also provided the foundation from which to co‐produce the Centre's large‐scale signature research studies. All decisions about processes documented in this manuscript were developed within this collaborative structure.

A Lived Experience and Co‐Production Advisory Committee comprising co‐production expertise and diverse LLE, across age, gender, identity and personal and caring roles, was also established to bring diverse voices to the process to guide and inform the program activities and outputs. All Centre work streams established diverse membership Advisory Committees meeting quarterly to guide activities, each including multidisciplinary and LLE representation.

Remuneration and intellectual property

Possibly the most essential factor requiring thought and transformation when transitioning to a co‐produced research agenda is the inherent power differentials ingrained within knowledge and professional systems (Pantazakos & Arnaud, 2024; Mooney et al., ²⁰²³). Equitable remuneration and the acknowledgement and protection of every collaborator's intellectual property (IP) as part of the process are foundational to addressing inherent inequities. Academics are protected by well‐established IP agreements and legal frameworks but other collaborators in research processes, particularly those contributing LLE knowledge, do not necessarily have such protections in place. To address this, the Centre worked with the general counsel of the University of Sydney (lead agency and signatory to the grant) to develop benchmarked remuneration levels for all LLE collaborators involved in the research design. It also developed what we believe to be the first recognition of Lived Experience know‐how in an IP definition clause globally. This clause was included in the collaboration agreements signed by all research, clinical and LLE collaborators in the co‐produced research program. The recognition of LLE know‐how was informed by an Indigenous Cultural and Intellectual property (ICIP) clause previously developed by the general counsel, that was also included in the agreements signed by all participants. The ICIP clause was designed to protect Aboriginal and Torres Strait Islander collaborators' contribution of their heritage (all objects, sites and knowledge transmitted from generation to generation through a range of mechanisms) to the centre work.

Co‐production principles

The Centre's Lived Experience and Co‐Production Program co‐leads and postdoctoral researcher, in collaboration with the Centre Director (SM), COO (PM), chief investigators and postdoctoral researchers, and with guidance of the Lived Experience and Co‐Production Advisory Group, developed two foundational resources to document and support the co‐produced research studies—the QuickStart Guide for Co‐Production in Eating Disorders Research (Australian Eating Disorders Research and Translation Centre, ^2025a) and the accompanying Lived Experience Co‐Production Checklist (Australian Eating Disorders Research and Translation Centre, ^2025b). These resources translate co‐production principles into an accessible document and online tool that enable researchers (working in any field) to assess and reflect upon the alignment of their projects with a co‐produced approach, offering tailored feedback and suggestions for improvement. Together, they outline the principles underpinning the Centre's co‐produced research agenda and Signature Studies, informed by a growing body of national and international standards and frameworks developed by research funding bodies (National Institute for Health and Care Research, 2025; NHMRC, ²⁰²⁵; NIHR Applied Research Collaboration Kent, Surrey and Sussex, ²⁰²¹) and research organizations (Autism CRC, 2016; Mind Australia, ²⁰²³; Strnadová et al., ²⁰²²). Table 1 outlines the Centre's co‐production principles synthesized from these national and international standards and frameworks.

TABLE 1.

Core principles guiding co‐produced research (Australian Eating Disorders Research and Translation Centre, ^2025a).

Power‐sharing requires explicit conversations about power. Sharing power means that everyone can equally contribute to and share the power in decision‐making. When power is shared, the team has joint ownership of the project and works together to achieve a common understanding. It is possible that power between members of the research team varies during the life of a research project according to expertise or stages of the research. It is essential, however, that power relations and dynamics remain equitable on the whole, keeping in mind that respectful and trusting relationships facilitate power‐sharing.

Including all perspectives and skills means people with different views, skills and expertise, including people with living and lived experience and people from underrepresented groups are included in the research team ensuring the team has the necessary expertise and knowledge to produce meaningful and relevant outcomes. Being inclusive requires research projects to be accessible. This can be achieved by ensuring meetings are accessible in terms of time, duration, frequency and location. Information should be presented in a range of formats that is appropriate and supports diversity.

Respecting and valuing all knowledge means that all types of knowledge, including knowledge based on first‐hand experience, is equally important, valued and respected in the research team. This requires intentional creation of an inclusive and safe space where all perspectives are welcomed and equally considered with regard to their potential to influence the research.

Reciprocity ensures that all members of the research team benefit in some way from working collaboratively towards a common goal or outcomes. This is linked to mutuality where everyone involved has responsibilities and expectations.

Building and maintaining relationships refers to developing trust, and mutually open, respectful and responsive communication. Building relationships can be difficult in research projects because of timelines and financial restrictions, deliverables determined by funding agencies, etc. Being transparent, identifying clear timelines and deliverables, and promoting honest and ongoing communication about the research project can contribute to authentic engagement processes and meaningful, trusting relationships.

Once research meetings commenced, collaborators collectively agreed on ways of working grounded in co‐production principles, which informed all decisions, activities and interactions. These ways of working included equal voice (which became embodied in the phrase ‘Never Shut‐Up – Always Listen’); careful language (to be mindful of potential harm, bias and meaning communicated in language); diversity in people, opinion and approach (in every stage, in every study committee); equal access to information (transparency at every stage); equity of resourcing (everyone remunerated for their time); seats at the table (creating many positions and opportunities to grow LLE participation and partnership); relationship, disagreement and emotion are essential parts of the process and we expect them to be alive in the room and to work with them throughout the process.

DOING THINGS DIFFERENTLY: IDEATION AND DESIGN OF THE CENTRE SIGNATURE RESEARCH STUDIES

Bringing the co‐production team together

The earliest meetings of the centre executive resulted in discussions about how the funding for the Signature Studies should be allocated. The grant application response had outlined a competitive process of consortium members in co‐production teams proposing study ideas to be adjudicated for funding allocation. The spirit of collaboration and an agenda of power‐sharing and knowledge building impacted the direction of discussions, and rapidly it was suggested that the Centre pivot to a fully collaborative process where 2 to 3 studies would be ideated and designed by the full co‐production team. This change in approach was taken first to the GC which endorsed it enthusiastically, and then discussed with the funders as a variation in agreement, at which time potential impacts on timelines were also discussed. In this instance, the funding agency was highly supportive of pursuing a full co‐production cycle to the research so indicated they were willing to tolerate delays and approved re‐structure of the timelines, budget allocations and deliverables.

In March 2023 in Sydney, Australia, the Centre brought together Consortium Leads, LLE collaborators and members of the International Advisory for a Think Tank to discuss for the first time eating disorders research in both Australia and the global context. Several LLE representatives were identified in partnership with the Co‐production Co‐Leads to contribute to the Signature Study process, representing a range of eating disorder experiences and co‐occurring mental and physical health conditions, with efforts made to recruit across diverse cultural backgrounds, genders, and identities. From the outset, it was recognized that diversity in LLE representation was essential to ensuring that the richness and heterogeneity of LLE perspectives were meaningfully included. This group was later formalized and expanded as the Lived Experience Reference Group (LE‐RG), with members contributing to each Signature Study Team.

This collaborative Think Tank was preceded by kick‐off Zoom meetings attended by all collaborators, during which confidentiality and the protection of all types of IP (as outlined above) in a shared ideation process were outlined. Publication and collaboration guidelines were also reviewed and accepted. All attendees at the Think Tank provided informed consent to participate in the ideation process in accordance with these guidelines. Following advice from another large‐scale collaborative consortium establishing a national centre for research in mental health (Heinz et al., 2020), social events were planned for the evenings before, during and after the Think Tank to support the development of connection, trust and community before commencing and throughout the process.

Phase 1: Ideation Padlet

Following the consent process, Think Tank collaborators were provided with three evidence summaries outlining the Centre's research priority areas: risk factors and early identification, early intervention and individualized medicine. These 3 priority areas were the top three research priorities identified by a James Lind–aligned national consensus building process in the year prior to the grant application and were thus committed to by the Consortium Leads (Aouad et al., 2023). An online brainstorming platform (Padlet Ideation Board) was made available to collaborators 4 weeks before the Think Tank. All collaborators were invited to contribute ideas for potential research studies aligned with the three priority areas. The purpose of the Padlet was to support and encourage idea generation in advance of the workshop, without the time pressure or demand characteristics typically associated with a group context.

An experienced LE researcher from the lead site (EB) and the LE Lead for the Centre (SC) hosted online drop‐in sessions via the Zoom platform for the LLE collaborators. These sessions aimed to support understanding of the ideation process and provide a space for questions or concerns about participation. The Padlet was closed 1 week before the Think Tank, to allow LLE and First Nations experts time to review all submitted ideas. They were invited to comment, add detail to study proposals and contribute additional study ideas. This step was intentionally included to honour the Centre's commitment to inclusion and equal voice, enabling equal contributions. In total, 76 study ideas were generated across the three priority areas and shared with all collaborators prior to the Think Tank.

Phase 2: Multi‐day collaborative ideation process

Collaborators came together in‐person for a 3‐day Think Tank including a series of ideation workshops. The aims of the workshops were to review the Padlet submissions and collaboratively generate research ideas and questions; determine which of those ideas had the potential to make the greatest impact if funded by the Centre; and ultimately, select and allocate dedicated research funding for the chosen research projects (referred to as the Signature Studies).

These 76 studies proposed on the Padlet formed the foundation for a roundtable discussion on Day 1, moderated by an independent science communicator engaged specifically for that process, followed by priority setting and study development workshops on Day 2, facilitated by the centre chief investigator (SM). On the final day, all collaborators had the opportunity to vote on study proposals for shortlisting.

Over the course of 3 days, collaborators were invited not only to consider the Signature Studies to be funded by the Centre but also to discuss and debate a broader range of issues relevant to eating disorders research and discovery—reflecting on the current state of the field and what future progress should look like. This helped ensure the direction of the funded studies was informed by both immediate priorities and a longer term vision. It is important to acknowledge that during the moderated round table discussion on Day 1, the Lead for the Aboriginal and Torres Strait Islander Program (LD) noted there were two major obstacles to the meaningful progression of First Nations focused research as part of this process. First, there was insufficient evidence from a First Nations perspective to determine research priorities for Aboriginal and Torres Strait Islander Australians, and the Western ideology‐determined time frames for research did not account for sufficient time for community consultation and therefore risked further harm to First Nations communities. Following discussion, it was concluded that this piece of work needed to be taken to the Aboriginal and Torres Strait Islander Program's First Nations Advisory Committee for further consultation and thought, to ensure all research efforts focusing on First Nations community were community‐led. This resulted in a separate but aligned process for the development of the first national Aboriginal and Torres Strait Islander focused eating disorders research projects in the Centre and will be reported elsewhere.

The CIA of the Centre (SM) facilitated further discussion with the aim of identifying a shortlist of studies for funding and progression. Padlet submissions that were similar or overlapping in nature or aim were clustered together and redundancies removed. Several studies were withdrawn at this point for various reasons, including limited strategic alignment with the Centre's focus or the expertise of this unique consortium. The remaining studies were thematically grouped into 6 priority areas, and all collaborators were invited to anonymously vote for their two highest priority areas (see Figure 2). Collaborators were also asked to rank the studies within each priority area in order of importance.

FIGURE 2.

Total votes on the six consensus areas.

Based on these votes, consensus was reached to support Signature Studies addressing the top three areas chosen: (1) Deep profiling (Phenotyping and Genotyping), (2) Adaptive/Clinical/Treatment/Platform Trial and (3) Understanding Mechanisms. Two study types were selected for development to address these priorities: one study focused on deep profiling, and one involving adaptive clinical treatment trials addressing personalisation, with the capacity to investigate underlying mechanisms of illness and change.

Designing the studies to address the agreed priority foci

Phase 3: Three‐month intensive co‐design process

Prior to the commencement of this phase, collaborators completed Co‐Production Training in the Foundations of Co‐design delivered by a nationally recognized organization (The Australian Centre for Social Innovation (TACSI)). This phase involved weekly 1.5‐hour hybrid meetings (via Zoom and in‐person) facilitated by the lead researchers from the 3 data collection sites for the studies (SM, AVG, LB) over the course of 12 weeks. The goal was to refine the objectives, aims and hypotheses, define the interventions and approaches to be tested, and determine the core design and methodological frameworks for each Signature Study, effectively creating a well‐formed blueprint for the scientific team to begin protocol development, with continued consultation with and oversight from the full co‐production team.

Collaborators self‐nominated to contribute to the co‐design of one or more of the Signature Studies. The Co‐Production Co‐leads then reviewed nominations to ensure appropriate coverage and diversity of perspectives. For Signature Study focus 1 (Deep Profiling), the team consisted of 6 clinicians, 10 researchers, and 7 LLE collaborators (2 of whom were carers). For Signature Study focus 2 (Adaptive Individualized Therapy Trials), the team consisted of 6 clinicians, 10 researchers, and 7 LLE collaborators (3 of whom were carers).

Emerging from the 12‐week process were three signature research studies to be conducted by the centre. The Holistic Understanding Study (deep phenotyping and genotyping), collecting a broad battery of bio‐psycho‐social metrics on approximately 700 people with a diagnosis of an eating disorder, spans diagnostic, gender, cultural, and age diversity. Two clinical trials were also to be supported, one targeting eating disorders marked by severe food restriction and one targeting eating disorders marked by binge eating behaviours.

THEMES, REFLECTIONS AND LEARNINGS

Direct influence of LLE on research direction

Throughout the co‐production process, the input of LLE collaborators fundamentally shaped the direction of the research—demonstrating genuine power‐sharing and equal respect for differing knowledge systems. LLE collaborators expressed a strong interest in ensuring the Signature Studies would meaningfully contribute to deepening understanding of the illnesses, which they maintained were currently poorly or superficially understood. This was evident throughout the process, and particularly during the roundtable discussion (Phase 2, Day 1), where these contributions were met with strong endorsement from the broader group. This input led directly to the decision to fund Signature Study 1 (the Holistic Understanding Study) designed to enable a comprehensive assessment of the bio‐psycho‐social underpinnings of eating disorders across genetic, metabolic, neural, cognitive, affective, behavioural and functioning domains. Importantly, the study's original title ‘Deep Profiling’ was changed following feedback from LLE collaborators, who raised concerns about the harmful connotations of the language. This highlighted the importance of intentional and inclusive language in research design and communication.

We need to take a step back and think about how rudimentary our understanding of these illnesses is. We always end up back at the measurements and models we are using. We need a total reconceptualisation of the illness profile. Before we do that, we can't move forward. (LLE collaborator)

Initially, the consortium leads had determined that there was sufficient funding to support only one clinical trial alongside the Holistic Understanding Study. However, LLE collaborators consistently offered an alternate position, advocating for the Centre to be genuinely national, to leave no‐one behind, and to think critically about how resourcing and capacity decisions could reinforce bias in the research agenda as reflected in the following comment from a LLE member: ‘It cannot be the national centre for Anorexia Nervosa; we need to do better than that’. In response, the budget, resourcing and proposed allocations were revised resulting in a commitment to support two clinical trials across rural and urban sites, one targeting eating disorders marked by severe restriction and one targeting eating disorders marked by binge eating.

LLE expertise during Phase 3 of the study design process also drove the inclusion of a qualitative study as a foundational step to inform the phenotypic and clinical targets for the studies. LLE collaborators viewed this as a critical activity to broaden input beyond the internal LLE group and to capture the perspective of people who did not yet have a seat at the table.

I think 1000% we need to do a qualitative study first ‐ I think that's the only way we can really get the true lived experience, which is what we need to develop dignity‐informed research, treatment and supports. (LLE collaborator)

Push and pull factors in the collaborative process

There is limited documentation in the scientific literature of the internal workings of co‐production in research, particularly regarding the natural tensions that arise when people with differing experiences and priorities collaborate towards a shared outcome. These tensions do not necessarily require resolution within the process; instead, they call for observation, acceptance, mutual respect and tolerance as part of the decision‐making and implementation process.

Regular debriefing opportunities for LLE collaborators (hosted by EB and SC) were included after each co‐production session, providing a protected space for reflection, processing and clarification. These sessions acknowledged that different people bring different communication styles and needs; not all contributors feel safe or comfortable sharing openly in large group settings. Alternative options for contribution, such as follow‐up conversations, email reflections or smaller debriefs, were offered to support diverse ways of communicating and strengthen inclusion.

Push and pull between feasibility and inclusion

In this setting, it was a priority for many LLE collaborators to ensure diversity, broad reach and inclusion. For researchers, concerns about resourcing, capacity, methodological rigour, time frames and therefore feasibility were often in discussion with the imperative to be inclusive and aim for broad reach. These differences, at least in part, reflected differing sets of experiences and distinct knowledge systems, including differing understandings of an ED and its impacts. Researchers understood the complexity of the research pipeline, the significant challenges, barriers and processes involved in any research project, and the impacts they have on time and resourcing. LLE members understood the experience of help‐seeking, the level of understanding in the community, the options available to a person seeking care, the experience of that care and its outcomes, determining at times diametrically opposed priorities for research. In looking for dialectical synthesis between these two viewpoints, active listening, humility, knowledge and experience sharing, creativity, active consideration of multiple potential design solutions and transparency in decision‐making were involved. There were also moments of disappointment and compromise. These were not viewed as failures but as necessary components of authentic collaboration between differently situated stakeholders.

Push and pull between scientific rigour and LLE priorities

A related tension pivoted around designing studies that would meet international standards for high‐quality research in both aims, methodology and statistical approach, and the need to creatively apply these standards to the questions and populations LLE argued were the priorities for action. Commitment to true reflexivity in action and a meaningful desire to create a new path forward meant questioning assumptions inherent in methodologies and designs, repeatedly revisiting and seeking clarity in study aims, and willingness from methodological and statistical experts to work for longer periods on design questions, ensuring they were comprehensible and open to critique and adjustment. This resulted in an extended time frame, which was necessary to uphold the integrity of co‐production while ensuring scientific rigour. The consequences and practicalities of managing extended time frames required ongoing conversations with both the GC and at times the funding body, increased investment from the lead agency for the staffing of collaborative processes over a longer period (at their cost), ongoing commitment and re‐commitment by the chief investigators to doing things differently, and of course flexibility and open communication between collaborators throughout.

Push and pull between consultation and study tasks

Research is a task and activity‐heavy endeavour, with much ‘hidden’ process and labour that can be difficult to understand or plan for if unfamiliar with the full research pipeline. LLE collaborators emphasized the importance of transparency, shared decision‐making and inclusion at every stage—as much as possible these were honoured. For example, with the co‐reflective practice sessions to unpack and discuss the conversations of study design meetings, and with the CIA specifically asking LLE collaborators for their input at junctures throughout all larger meetings—yet these ideals sometimes sit in tension with the need for efficiency and productivity. Trust, respect and engagement are crucially impacted by the ability of the co‐production team to meet this requirement. This placed much focus on consultation and discussion, which does consume time, a commodity that in the research pipeline is always under pressure. A natural tension between researchers aware of funding timelines and deliverables and the urgency this created for activities to be completed without the need for further consultation existed in dialogue with the request for consultation, discussion and knowledge sharing throughout.

Push and pull between the knowledge needs of LLE and research collaborators

The knowledge needs of LLE collaborators engaging in a co‐produced research activity may be very different from those of research and clinical collaborators (Bell et al., 2023). Researchers and clinical collaborators can at times approach knowledge sharing in co‐production with a focus on drawing upon LLE experiences and knowledge that ‘assist’ the researcher in proceeding with the next task in the design process. It was a repeated experience during the design of these studies that, in order to participate meaningfully in the design process, LLE required training or explanation in research methods, terminology, treatment modalities and statistical approaches. At times, ‘progress’ needed to pause to locate or develop resources that addressed knowledge inequality and returned the process to a more equal footing. Researchers and clinicians tended to have an assumed understanding of their role in the process, which caused less confusion for them as they moved through it. LLE collaborators, on the other hand, raised questions about their role and what was expected of them. At times, they expressed doubt about their expertise and ability to contribute. Some expressed feeling compelled to make sure they understood as many aspects of the research process as possible, as they were aware of the privileged position they held in influencing the agenda and wanted to best represent the needs of the LLE community. Contributing to co‐produced research was emotionally taxing for some LLE collaborators, particularly given the subject matter, as it often involved revisiting distressing personal experiences while also learning to navigate unfamiliar research systems (Faulkner & Thompson, 2023). Recognizing this, the LE Lead facilitated regular co‐reflective practice opportunities and, where needed, ensured that peer support was also available throughout the process. Co‐reflective sessions offered protected space for shared reflection and clarification, while separate peer support options allowed LLE contributors to process more personal or distressing content as needed.

This highlighted the importance of clear and ongoing communication with LLE collaborators about their role and expectations, and the need to collectively determine what LLE collaborators and researchers need from each other—and when—at the outset of the process.

SUMMARY AND CONCLUSIONS

By bringing together people with LLE, alongside clinical and a range of research expertise (including neuroscience, intervention‐focused, basic science, biostatistical, methodological), the co‐production process implemented throughout the Signature Studies of the centre has enabled a deeper understanding of complex issues, leading to more thoughtful, ambitious, innovative and relevant solutions, ultimately increasing the likelihood of meaningful, real‐world impact. Importantly, the established governance structure with LLE leadership throughout all levels and a dedicated Lived Experience and Co‐Production program informed by a diverse LE‐RG ensures that co‐production principles are not simply espoused but enacted. These collaborative spaces were designed to support trust and mutual learning. Power‐sharing and respect for all forms of knowledge continue to be essential guiding principles of the Signature Studies and the Centre activities, supported by inclusive structures that value relational insight, experiential wisdom, clinical and academic expertise equally.

Reciprocity has been a key principle and output, with all collaborators—regardless of role—gaining something from the shared work, whether through personal growth, skills, knowledge, connection or impact. Strong emphasis has been placed on building and sustaining authentic relationships and ensuring the governance structures are sufficient to support the work. Despite the challenges posed by time, resource constraints and emotional intensity, the integrity of the co‐production process has been sustained through the collaboration, with consistent reflective practice and inclusive leadership anchoring both research and relational priorities seeking balance and where possible integration of the two.

AUTHOR CONTRIBUTIONS

SM, PM, GP, SC, SB: conceptualization, methodology, formal analysis, writing—original draft; All other authors: conceptualization, methodology, formal analysis, writing—review and editing. All authors contributed to the article and approved the submitted version.

FUNDING INFORMATION

This work was supported by the Commonwealth Department of Health: the Australian Eating Disorders Research and Translation Centre (P051002‐4GOTT7NX).

CONFLICT OF INTEREST STATEMENT

None to declare.

DATA AVAILABILITY STATEMENT

Data sharing not applicable to this article as no datasets were generated or analysed during the current study.