People with lived experience (PWLEs) of mental disorders represent a critical but underutilized resource in mental health research. According to a commentary published in The Lancet Psychiatry, meaningful involvement of PWLEs enhances research relevance, validity, and promotes genuine social inclusion—yet this engagement remains inconsistent and challenging in India and resource-limited settings globally.
Key takeaways
- People with lived experience are recognized as “experts by experience,” offering insights that directly improve mental health research design and outcomes
- Meaningful PWLE engagement in India faces structural, financial, and institutional barriers despite growing international recognition of its importance
- Practical strategies—from transparent recruitment to equitable compensation and sustained partnership models—can overcome these challenges
- The Health Policy landscape increasingly requires PWLE involvement, making systematic approaches essential
Who Are People With Lived Experience and Why They Matter
PWLEs are individuals with direct personal experience of mental health conditions who contribute their expertise to research processes. According to The Lancet Psychiatry commentary, this perspective enriches multiple research phases: problem identification, study design, data collection and interpretation, and dissemination of findings. Their involvement ensures that research questions reflect genuine patient needs rather than researcher assumptions.
The value extends beyond methodological rigor. PWLEs bring contextual understanding of stigma, access barriers, and treatment preferences that clinicians and researchers may not fully appreciate. This contribution aligns with broader Global Health movements toward co-production of knowledge and patient-centered research.
Barriers to Meaningful PWLE Engagement in Mental Health Research
Primary challenges reported in low- and middle-income settings including India
Source: The Lancet Psychiatry Commentary, 2026 | Based on research challenges documented in India and comparable settings
Structural and Institutional Barriers in India
India faces particular challenges in embedding PWLE engagement into mental health research. According to The Lancet Psychiatry, these obstacles operate at multiple levels: insufficient institutional frameworks recognize PWLE contributions; research funding mechanisms rarely allocate resources for meaningful involvement; and institutional cultures often perpetuate stigma that discourages PWLEs from participating openly.
Financial barriers are acute. Researchers frequently lack dedicated budgets to compensate PWLEs fairly for their intellectual labor and time. This creates a double inequity: PWLEs often come from economically disadvantaged backgrounds, yet are expected to contribute unpaid labor to research that may directly benefit their communities. The commentary emphasizes that inadequate compensation is not merely an ethical failing—it systematically excludes the most marginalized voices and biases research samples toward higher-income, more educated PWLEs.
Additionally, formal recruitment pathways scarcely exist. Without transparent, accessible mechanisms to identify and engage PWLEs, research teams default to convenience sampling through clinical services, potentially skewing samples toward individuals engaged with formal healthcare and excluding those navigating informal mental health systems or entirely outside healthcare structures.
Practical Strategies for Meaningful Engagement
The Lancet Psychiatry commentary draws on direct research with PWLEs to propose concrete strategies that institutions and research teams can implement:
Transparent recruitment and selection: Develop explicit, publicly accessible criteria and processes for identifying and inviting PWLEs. Move beyond clinical gatekeeping to include community-based organizations, peer support networks, and self-identification mechanisms. This widens the pool and ensures diversity of experience and perspective.
Equitable compensation and recognition: Allocate dedicated budget lines within grant proposals for PWLE compensation, matching or exceeding standard research staff rates. Recognize PWLEs as collaborators rather than study participants—include them on publications, grant applications, and institutional advisory boards where appropriate.
Sustained capacity building: Provide training in research methods, ethics, data interpretation, and communication—not as a one-time orientation but as ongoing professional development. This investment signals respect and builds research literacy necessary for meaningful contribution across all project phases.
Formalized partnership agreements: Create written collaboration frameworks specifying roles, responsibilities, decision-making processes, intellectual property, and dispute resolution. Clear agreements prevent misunderstandings and ensure PWLEs have genuine voice, not token representation.
Accessible research environments: Redesign research meetings, documentation, and communication to be accessible—plain-language materials, flexible scheduling, mental health support during intense sessions, and removal of jargon. Accessibility is not an add-on; it is foundational to inclusion.
Meaningful engagement of people with lived experience significantly improves research validity, relevance, and social impact—yet requires institutional commitment, transparent processes, equitable compensation, and sustained partnership rather than tokenistic participation.
— Commentary authors, The Lancet Psychiatry (2026)
Policy and Research Implications
The Lancet Psychiatry Commission highlighted PWLE inclusion as a core component of mental health research excellence. This emerging consensus carries implications across sectors. Research funding bodies—national, state, and international—can mandate PWLE involvement in grant reviews and funding criteria. Institutional ethics committees can require documentation of PWLE engagement as a condition of approval. Academic institutions can establish formal positions for PWLEs in research governance and create career pathways recognizing this expertise.
For India specifically, the National Institute of Mental Health and Neurosciences (NIMHANS) and other leading research centers have opportunities to pioneer models that other low- and middle-income countries can adapt. Policy frameworks from India’s National Mental Health Program can evolve to institutionalize PWLE involvement in research planning and priority-setting.
The broader implication is reframing mental health research from an extractive model—where researchers study PWLEs—to a collaborative model where PWLEs are recognized as co-investigators and knowledge producers. This shift aligns with international commitments to research justice and genuine co-production.
What this means
Frequently asked questions
What is the difference between including PWLEs as research participants versus meaningful engagement?
Including PWLEs as study subjects (e.g., answering survey questions) is participation; meaningful engagement involves PWLEs in research decisions and design. According to The Lancet Psychiatry commentary, meaningful engagement means PWLEs help formulate research questions, design methods, interpret data, and disseminate findings—with equitable compensation, recognition, and genuine influence over decisions.
Why is PWLE engagement particularly important in India and resource-limited settings?
In countries with limited mental health infrastructure and research funding, the gap between what researchers study and what communities need is often widest. The Lancet Psychiatry emphasizes that PWLE involvement ensures scarce research resources address priorities that reflect lived reality and increase the likelihood findings will benefit those who need them most.
How can research institutions start implementing PWLE engagement if they lack experience?
Begin with transparent recruitment of PWLEs for one or two discrete research projects; establish written partnership agreements; allocate dedicated budget for compensation; provide training; and create regular feedback loops. The commentary recommends starting small, documenting what works, and scaling successful models gradually while building institutional capacity and culture change.
The path toward meaningful PWLE engagement in mental health research in India is neither quick nor costless—it requires institutional commitment, cultural shift, and resources. Yet the evidence increasingly demonstrates that this investment strengthens research quality, accelerates translation to practice, and honors the expertise and dignity of people whose lived experience offers irreplaceable insight. As the Clinical Updates landscape evolves toward patient-centered approaches, Indian research institutions have an opportunity to lead by centering the voices and priorities of those most affected by mental health challenges.
Source: Meaningfully engaging with persons with lived experience in mental health research in India: challenges and recommendations, The Lancet Psychiatry (2026)
Was this article helpful?
Disclaimer. This article is health journalism intended for general information and education. It is not medical advice and is not a substitute for professional diagnosis or treatment. Always consult a qualified healthcare provider about your individual circumstances. Full disclaimer →
Related Coverage
Medically reviewed by Prof. Giorgi Pkhakadze, MD, MPH, PhD. Spotted an error? Contact the editorial team.
