In recent years, the call for greater patient and public involvement and participation (PPIE) in health research has grown louder, underpinned by ethical imperatives and the promise of more relevant, responsive science. Yet, within the niche but critical domain of child and adolescent mental health research, this momentum faces significant conceptual and methodological challenges. Experts Singh, Viding, Spencer, and colleagues argue emphatically that the current state of PPIE in this area is hampered by a lack of rigorous theoretical frameworks and systematic evaluation strategies. Their perspective, published in Nature Mental Health, highlights the urgent need to transform PPIE from a well-meaning but inconsistent practice into an evidence-based scientific discipline with clear epistemic and ethical underpinnings.
At the heart of this discourse lies the complex and often nebulous concept of “lived experience,” a term widely used but poorly defined and operationalized in mental health research contexts. The authors pinpoint that without a precise and shared understanding of what constitutes lived experience, efforts to integrate patient and public voices become vulnerable to tokenism or misrepresentation. This vagueness undermines not only the authenticity of contributions but also the potential for these experiences to meaningfully inform research design, execution, and interpretation. The Vision the authors put forth calls for a rigorous ontological and epistemological unpacking of lived experience, situating it explicitly within child and adolescent psychology and psychiatry frameworks.
In parallel, the notion of “voice” demands similar scrutiny. While patient and public voices are often heralded as essential to democratizing the research process, the mechanics of how these voices are elicited, amplified, and integrated remain inconsistent and insufficiently theorized. The authors stress the necessity of distinguishing between mere participation and genuine influence, advocating for frameworks that can parse the dynamics of power, representation, and communication that govern whose voice counts in research environments. They argue that the failure to address these nuances risks perpetuating existing hierarchies and marginalizations rather than alleviating them.
Beyond conceptual clarity, Singh and colleagues highlight that the field lacks robust empirical methods to systematically assess the impact of PPIE activities. Evaluation metrics have traditionally been informal, anecdotal, or limited to process indicators such as satisfaction or attendance, which are insufficient to capture deeper epistemic and ethical outcomes. Measuring how PPIE tangibly advances scientific discovery, enhances methodological rigor, or changes research priorities remains a frontier. The authors advocate for the development of validated tools and longitudinal studies that can reveal the nuanced pathways through which PPIE shapes knowledge production in child and adolescent mental health.
The ethical dimensions of PPIE are equally complex and demand continuous reflection. The authors caution against simplistic portrayals of PPIE as an unequivocal good, noting that involvement can sometimes expose vulnerable populations to harm, misunderstanding, or exploitation. Particularly in studies involving young people with mental health challenges, safeguarding autonomy and ensuring meaningful consent requires sensitive, context-specific approaches. This ethical precariousness reinforces the need for a science of PPIE that anticipates and addresses potential moral pitfalls with rigor and accountability.
Coupled with ethical concerns, the diversity and representativeness of participants in PPIE warrant serious consideration. The authors underscore that many PPIE initiatives risk reinforcing existing inequalities by recruiting from narrow demographic pools or privileging more articulate and empowered voices. Addressing these disparities calls for intentional outreach, culturally sensitive engagement strategies, and adaptive methodologies that can capture the multiplicity of experiences within child and adolescent populations. Such inclusiveness is essential not only for fairness but also to enrich the scientific validity of findings.
The authors propose that developing a shared, interdisciplinary framework is crucial for advancing these aims. Such a framework would integrate perspectives from psychology, philosophy of science, ethics, and health policy, serving as a common language and roadmap for researchers, patients, families, and advocacy groups. They envision this scaffold facilitating transparent dialogue, comparability across studies, and cumulative learning about what PPIE achieves and how it can be optimized. Only through collective and systematic effort can PPIE transcend current nebulous practices toward becoming a mature scientific endeavor.
This emerging field demands innovative methodological designs that combine qualitative and quantitative approaches. Mixing narrative analyses of patients’ stories with statistical examination of participation impacts, for example, could offer richer insights into the multidimensional effects of PPIE on research outputs. The authors also encourage embracing digital tools and platforms that expand access and enable real-time feedback loops, potentially transforming PPIE into a dynamic, iterative process rather than a static engagement.
Importantly, Singh and colleagues call for open and multi-stakeholder dialogue as a starting point. They articulate ten critical questions designed to stimulate debate, transparency, and consensus-building within the research community and beyond. These questions challenge assumptions about who defines lived experience, how ethical tensions are managed, what balance should exist between participation and scientific independence, and how success should be evaluated. This self-reflective approach embodies the meta-scientific commitment that the authors advocate—a science of PPIE that scrutinizes its own premises and outcomes.
The implications for child and adolescent mental health research are profound. Given the complexity and sensitivity of this field, ensuring that research is shaped by those most affected can yield more nuanced understanding, more effective interventions, and ultimately better outcomes. A rigorous science of PPIE could bridge the gap between clinical innovation and real-world relevance, accelerating progress in tackling childhood and youth mental health disorders that impact millions globally.
Yet, this task is far from trivial. It requires multidisciplinary collaboration, resource investment, and cultural shifts within academic and clinical institutions. Researchers must embrace humility and adaptability, recognizing that embracing patient and public knowledge may challenge long-standing epistemic hierarchies but is essential for democratizing science. Funders and policy-makers must incentivize methodological rigor and ethical integrity in PPIE, moving beyond lip service to integrated evaluation criteria.
In sum, the call from Singh, Viding, Spencer, et al. represents a clarion message to the global mental health research community. Establishing PPIE as an integrated, scientifically sound discipline is not merely aspirational but essential for the maturity and relevance of child and adolescent mental health science. Their Perspective invites an ambitious reimagining of the research enterprise where patient and public participation moves from being an add-on to a foundational component with tangible, scrutinized, and ethically grounded contributions.
The trajectory laid out is simultaneously challenging and hopeful. If realized, a science of PPIE could serve as a model for other fields traditionally distanced from lived experience and public influence, fostering a more inclusive, effective, and ethically attuned research ecosystem. As mental health challenges among young people escalate worldwide, the need for this transformation—emboldened by conceptual clarity, rigorous evaluation, and ethical vigilance—is more urgent than ever.
In the next stages, it will be critical to operationalize the concepts delineated by the authors, develop shared measurement instruments, and pilot interdisciplinary frameworks that engage a broad array of stakeholders including children, adolescents, caregivers, clinicians, and researchers. Only through such concerted, deliberate action can the field fulfill the promise of PPIE and redefine research paradigms towards genuinely participatory, equitable, and scientifically robust mental health knowledge generation.
This visionary call underscores that the future of mental health research depends not only on discoveries made in labs but also on integrating voices and experiences from the realities of childhood and adolescence. As Singh, Viding, Spencer, and their team eloquently argue, achieving this requires building a science that values and evaluates participation with the same rigor applied to any clinical or basic research method. The road ahead is demanding but the potential rewards—in knowledge, ethics, and wellbeing—are transformative.
Subject of Research: Patient and public involvement and participation (PPIE) in child and adolescent mental health research
Article Title: The need for a science of patient and public involvement and participation in child and adolescent mental health research
Article References:
Singh, I., Viding, E., Spencer, L. et al. The need for a science of patient and public involvement and participation in child and adolescent mental health research. Nat. Mental Health (2025). https://doi.org/10.1038/s44220-025-00497-1
Image Credits: AI Generated
