People have the right to participate in decisions that affect their lives (1). Public and patient involvement and engagement (PPIE), which overlaps in content and definition with ‘participatory research’ and ‘service user involvement’, has the potential to democratize research processes and introduce a shift in power and ownership towards public members (2–4). Levels of participatory research involvement can range from consultation (researchers seeking feedback from people with lived experience) to collaboration (co-production of research) and user-lead research (people with lived experience are in control of research) (5, 6). Over the past few decades, participation in psychiatry has marked a shift towards involving people with lived experience of mental illness (PWLE) as active participants in mental health research, recognizing their personal experiences as expertise (4). There is growing recognition of the importance of PPIE in psychiatry research, i.e., the National Institute for Health and Care Research (NIHR) INVOLVE framework defining best practices for PPIE in health research with public involvement in its principles from its beginning in 2006 (7). Furthermore, PPIE is a required component of many funding grants. The inclusion of co-researchers with lived experience in psychiatric research is supported by both epistemic and ethical justifications. Some argue that those directly impacted should be able to contribute to psychiatric research in the interest of “nothing about us without us”, while others prioritize the value of gaining new and changing existing knowledge in research (8, 9). Indeed, the Lancet Commission on Ending Stigma and Discrimination in Public Health found that the involvement of PWLE as co-producers is the most important factor in stigma reduction interventions (10). Challenges associated with PPIE include a lack of knowledge that can result in a feeling of being unable to contribute in a meaningful way (11), power imbalances between researchers and service users (12) as was well as tokenistic involvement (13) and financial and structural barriers, i.e., lack of funding or institutional support (14, 15).

The prevention of severe psychiatric disorders, such as psychotic disorders, is considered highly relevant (16, 17) with respect to the negative effects of these disorders on disability-adjusted life years (DALY) (18), decreased life expectancy (19) and impairments concerning quality of life (20). Research on indicated prevention of psychosis began about 25 years ago (21). Indicated prevention in psychosis high risk states was found to reduce existing symptoms, delay or potentially prevent transition towards manifest psychosis, reduce health care utilization, and shorten the duration of untreated psychosis (17, 22, 23). The operationalized criteria for identifying individuals at “ultra-high risk for psychosis” (UHR) or “clinically high risk for psychosis” (CHR) were developed to identify an increased risk for the development of manifest psychosis in help-seeking individuals with distress (24, 25), i.e., the basis for preventative research. UHR criteria consist of one genetic and deterioration criterion (GRDS) and two criteria that include distressing experiences below the threshold of manifest psychotic symptoms either with respect to time or with respect to frequency and intensity: “attenuated psychotic symptoms” (APS) and “brief limited psychotic symptoms” (BLIPS) (24). Initial studies on transition rates in UHR individuals showed a rate of 30% of first episode psychosis onsets within one year (26). However, in recent years, transition rates have decreased to about 25% at three years (27), bringing about a critical discussion: Some have questioned the validity of the concept itself and raised concerns about possible stigmatization with associated terms such as “prodromal”, “risk” and “early detection” (28). Other have argued for the validity and clinical utility of the UHR/CHR construct, expanding it to a transdiagnostic at-risk mental state (29). Indeed, risk recognition is a key task in preventative medicine and implies early intervention measures of risk and symptom. In light of the mentioned discussion, a collaboration with individuals with lived UHR-experience is highly necessary to discuss and reflect on UHR terminology and therapeutic and diagnostic interventions, as well as address unmet needs and personal insights of those with lived experience. A recent review, co-authored by experts with lived experience, describes the importance of acknowledging PWLE’s perspectives and experiences across the clinical stages of psychosis (30). While participatory research with people with psychotic disorders at various levels of involvement and collaboration (31–33) does exist, there are few participatory research studies (34, 35) with people at psychosis high risk states as co-researchers.

In the current paper, we present the participatory research process of the VOICE project and its outcomes. The VOICE project is a co-creation research project including mental health professionals and co-researchers with lived experience of UHR. Within this participatory project, we aimed to identify unmet needs of those with lived UHR experience, to implement project objectives based on unmet needs and to reflect on the psychosis high risk concept, UHR terminology and diagnostic and treatment options. A particular strength of the VOICE project was its open and fluid process. Consequently, the jointly developed project goals and outcomes were partly subject to change during the research process.

Results can be divided into those concerning (i) description and evaluation of the co-production process (ii) project outcomes (unmet needs/reflection on terminology/diagnostic and treatment options).

This paper illustrates the participatory process of a co-creative project with collaboration between individuals with lived experience of psychosis high risk states and psychiatrists experienced within this field. Unmet needs of co-researchers with lived UHR-experience included provision of and free access to specific information and knowledge on psychosis risk states, e.g., on social media, a website; opportunities for personal meetings and personal exchange within the group of those affected (“jour fixe”), and the creation of more public awareness and knowledge about UHR in the professional field, e.g., in care institutions. In order to raise awareness, provide free access to information for those affected and stimulate the scientific discourse in the psychosis high risk research community, it was aimed to make the majority of the project results freely available, e.g., via open repositories and open access publications. Another key outcome was gaining valuable subjective insights into the participatory research process with co-researchers at high risk for psychosis.

In general, the body of quantitative research in the field of participatory research and especially evidence for the impact of involvement on the analysis of quantitative data is scarce (38). In line with other, mostly qualitative, studies (39, 40), a positive impact was found for project participants with high levels of overall satisfaction including enjoyment, involvement as well as personal takeaways such as interesting contacts, knowledge and new ideas. Participants felt taken seriously, able to voice opposing opinions and influence content, results, procedure and design of the project process in the workshops. In previous research (41–44), involvement of co-researchers with lived experience was discussed to disclose more sensitive information, a willingness to freely and honestly share opinions and experiences, and consequently, improve data collection due to a potentially adopted terminology and more sensitive approach. In line with other studies reporting benefits from working with peers, i.e., new friendships and opportunity for exchange and support (40, 45–47), project participants reported high levels of connection within the research group and satisfaction with the selection of project participants as well as making interesting contacts. Project participation was experienced as useful, meaningful and motivating in our workshops. Similarly, participants of previous participatory research projects reported involvement as an “valuable stone to work” (39), “meaningful” (48), “encouraging to speak up and out on issues they felt strongly about, advocating for themselves” (45), increasing self-confidence and self-esteem (48–51).

One possible explanation for the positive perception of the participatory research process by the project participants might be the involvement of co-researchers with lived experience from the project’s very beginning. Research found an early involvement into the research process helpful for reshaping and clarification of research questions as well as challenging of persisting assumptions and aims (46, 52, 53).

In a recent meta-analysis, a positive effect of participatory research was found concerning health service access, self-efficacy and physical health. While initially no significant effect was found for individual mental health outcomes, effects were altered to significantly higher for mental health when patients and the public were involved in more than one research level (54). In this project, participants were free to be involved in various research levels and to undertake one or multiple roles and tasks. For example, a co-researcher with lived experience could be part of the core team in a leading and decision-making role and also be in charge of the social media content or present the project and its outcome at a conference. Strength-based roles of co-researchers were created through identification of individual skills that co-researchers brought to the project team, e.g., production of social media content, videography, writing or artistic talents such as graffiti arts. Consequently, the project had a huge benefit by recognizing co-researchers’ expertise, interests and talents resulting in tailor-made co-created tasks in the implementation of project outcomes. While mental or physical health of participants was not assessed within this project, participants reported a high level of satisfaction within the workshops and aspects of co-creation. Future research might address any effect on mental health within different levels of participation in research.

Previous research showed that flexibility to modify and interchange roles fostered versatility and adaptability among co-researchers engaged in participatory research initiatives. This, in turn, diminishes the probability of being restricted to a singular task (55). Within our project process, we reviewed and debated roles and participatory research activities during and between workshops to permit each project participant the chance to change their level of participation and capacity.

It was tried to avoid power imbalances in the project process by consensually agreeing on rules for collaboration, including a right for giving a “veto” and having an equal number of clinicians and experts by experience in the Core Team as well as in the study advisory group. Emotional work, creating a safe space to co-produce and transparency in decision making were further proceedings designed to establish a secure and comfortable environment for all project participants. While quantitative data analysis implicates an atmosphere of excitement, connection and feeling of purpose, our sample size was very small and thus, results cannot be generalized to participatory research in general. Critical voices concerning certain aspects of participation in mental health research, such as unequal relationships and academic privileges, as well as emotional distress and the complexity of a dual identity has to be taken seriously and evaluated in future research (56, 57).

Involvement of individuals with lived experience into the development of research materials was found to improve understandability in patient information sheets in several participatory research projects (39, 43, 44, 58). Future research has to prove in how far our project outcomes including informational handouts for those affected show differences and potential benefits compared to information material produced without any involvement of experts with lived experience.

The relevance and methodological strength of this participatory research project lies in its flexible, fluid, and iterative approach and its co-creative process from the very beginning by already collaborating with a co-researcher with lived experience during the composition of the project application. Participatory research and co-creation were implemented throughout all project activities. Project outcomes were executed in a co-creative manner at all levels.

In participatory research projects with people with lived experience of mental illness (PWLE), the potential dual identity of co-researchers can result in “colliding worlds” (59, 60): While co-researchers offer expertise and firsthand knowledge based on their experiences, their dual identity may make them susceptible to being viewed primarily as patients rather than equal research participants. Achieving a balance between acknowledging their experiences and knowledge as expertise and avoiding stigmatization and power imbalances requires careful consideration. To ensure adequate knowledge among co-researchers on psychosis high-risk states, we conducted brief presentations on specific topics such as assessment and treatment recommendations in psychosis high risk states.

Tokenism can be a potential hazard in participatory research, e.g., when participation with co-researchers is a compulsory condition for funding applications (8). By excluding the co-researchers’ meaningful influence in the project, PPIE can become a “box-ticking” exercise (61) potentially resulting in disempowerment of participants with lived experience (62). To address the issue of tokenism, it is crucial to prioritize authentic engagement, respect, and reciprocity in participatory research. This involves building trusting relationships, valuing diverse perspectives, actively involving participants in decision-making processes, and ensuring that their contributions are acknowledged and incorporated into the research findings and outcomes. By already including a co-researcher during the conceptual stage of the project, we aimed for a non-hierarchical co-creation process from the very beginning. Creating a balanced guidance structure of co-researchers with lived experience and psychiatrists within the core team and the study advisory group with clear role descriptions was another attempt to avoid tokenism as much as possible. Further, in this PPIE project, workshops were evaluated according to different dimensions such as satisfaction, involvement and aspects of co-creation. The findings indicated a positive collaboration with high levels of satisfaction, involvement and co-creation aspects as well as a meaningful and connecting project process. However, the results of this quantitative data analysis are limited due to the small sample size and the purely descriptive analysis.

Other criticisms of participatory research include alleged reliance on anecdotal research based solely on individual experiences, resulting in an assumed inability to generalize conclusions or outcomes to broader (clinical) populations, and concerns about the representativeness of co-researchers (63). The co-researchers involved in VOICE and the subsequent project VOICE+ were highly motivated, most of them with a high level of socio-occupational functioning. Given that individuals at high risk for psychosis vary widely in education, occupation, distress levels, symptoms and comorbidities, it is unclear whether our projects fully represent this heterogeneity. While concerns about representativeness in participatory research are valid, it is equally important to question whether traditional research – often conducted without lived experience – truly captures the full spectrum of perspectives needed for meaningful mental health research (64).

In general, the level and nature of engagement within a participatory process will vary depending on the discipline and type of study. While some research areas, e.g., qualitative mental health studies, may allow for deep involvement of co-researchers with lived experience during all stages of the research process, other disciplines, such as neuroscience, genetics or randomized controlled trials, may present more challenges in direct participation. However, meaningful involvement remains possible and valuable at different stages including shaping research questions, informing ethical considerations, improving recruitment strategies, refining outcome measures and enhancing dissemination of findings.

In this participatory project, unmet needs of co-researchers with lived UHR experience could be identified in a co-creative process including free access to information on psychosis risk states, opportunities for personal exchange, and the creation of more public awareness and knowledge about UHR in the professional field. Thus, participatory research with co-researchers with lived experiences in the field of prevention and early intervention in psychiatry, such as psychosis high risk states, may result in an increased awareness towards specific mental health conditions, provision of targeted knowledge and information for those affected and stimulation of the scientific discourse in this area. Perceptions of individuals with lived experience are heterogeneous concerning the psychosis high risk concept and terminology within the field of mental health. This heterogeneity of perception illustrates the necessity of addressing individual needs and utilising diverse terminology and explanatory models. A “one-size-fits-all” approach seems therefore not appropriate. The involvement of individuals with lived experience as “experts by experience” facilitates the generation of valuable insights that can be used to continuously refine work materials and terminology in mental health research and clinical work. This ensures that information is disseminated to the intended audience and that those who require it are able to benefit from it. However, despite different perceptions towards mental health concepts and language, the necessity of an adequate terminology for psychiatric conditions was deemed crucial by both medical professionals and co-researchers with lived experience.

As stated by Rose and Rose (65), in order to truly address epistemic injustice, mental healthcare professionals must move beyond merely “listening to the voices” of mental health service users and instead regard the experiences of those impacted as expertise. Apart from epistemic as well as ethical justifications for participation in psychiatry, future studies have to investigate to what extent the participation of people with lived experience of mental illness (PWLE) can contribute to an actual improvement in awareness, treatment and early detection of psychosis high risk states. In conclusion, to enhance prevention in psychiatry, individuals with lived UHR-experience should and have to be included into future research. Future research could explore tailored approaches for integrating PPIE in different study designs, ensuring that contributions are meaningful while respecting methodological constraints. Recognising these nuances will strengthen the impact and applicability of participatory research across disciplines in psychosis research.