Meaningfully engaging with persons with lived experience in mental health research in India: challenges and recommendations

Introduction

People with lived experience (PWLEs) of mental disorders are recognized as “experts by experience,” offering insights that enrich mental health research.¹ Their involvement enhances relevance and promotes social inclusion, yet meaningful engagement remains challenging in India and many other areas with limited mental health resources globally. This commentary examines these challenges and draws on our research with PWLEs to propose practical strategies. The Lancet Psychiatry Commission highlights the importance of PWLE inclusion.² Tools such as the engagement ladder (Fig. 1)³ illustrate pathways from minimal involvement to PWLE-led research, underscoring the need for structured, context-sensitive approaches.

Fig. 1.

Levels of PWLE engagement. Adapted from Eisinger and Senturia, 2001.³

The involvement of PWLEs in mental health research has gained global momentum, supported by frameworks such as WHO guidelines and international patient engagement models.^4,5 These emphasize engagement across the research lifecycle to ensure relevance and inclusivity. While such practices are increasingly common in high-income countries, they remain limited in low- and middle-income countries (LMICs).^1,5 Recognizing PWLEs as “experts by experience” is critical, as they bring context-specific insights that improves relevance and ethical integrity.⁴ PWLEs can shape research agendas by identifying meaningful topics, co-developing methodologies, and supporting shared decision-making^1,5; however, stigma remains a major barrier to their engagement in LMICs like India.⁶ Evidence from the Indigo Project⁶ and a case study from India highlight how internalized stigma and societal stereotypes often undermine credibility and discourage participation.⁷ Unlike organized PWLE networks in high-income settings, LMICs often lack structured groups, making recruitment fragmented, creating challenges in compensation, continuity, and accountability. Additionally, researchers often lack clarity on PWLE roles, limiting the development of PWLE-led organizations and sustainable partnerships. Despite these barriers, PWLEs can play a transformative role by advising on inclusive recruitment strategies, building trust, and promoting participation.⁴ Meaningful engagement requires a deliberate shift in power dynamics, valuing experiential expertise as integral to improving mental health outcomes. Strategic approaches that adapt global best practices to local contexts are essential for LMICs to foster equitable partnerships, strengthen research relevance, and advance participatory research.

Researchers have identified strategies to overcome challenges in engaging PWLEs in mental health research in LMICs⁸ and high-income settings.⁹ For example, in the ARTEMIS and ANUMATI trials in India,^8,10 Adolescent Expert Advisory Groups (AEAGs) comprising adolescents with lived experience of depression provided critical insights during intervention development and implementation, acting as advisors and partners (see Fig. 1). AEAG members were recruited through a stepwise, stigma-sensitive process embedded within community-based engagement activities. Adolescents were identified through screening and referrals by trusted community health workers⁸ with eligibility confirmed through discussions prioritizing assent, confidentiality, and willingness to engage.⁸ This approach reduced stigma-related risks common in low-resource settings. Adolescents reported feeling empowered as their experiences informed research and implementation, reinforcing ownership.⁸ Engagement was based on mutual trust and respect for contextual knowledge, leading to co-developed stigma reduction campaigns and improved community mental health literacy.⁸ Meaningful engagement requires structured support systems, training, mentoring, and emotional support for PWLEs.^4,5 Researchers also require capacity-building to understand the role and use of PWLE engagement.¹¹ This includes structured orientation sessions on the engagement ladder, joint workshops where researchers and AEAG members map decision points across the research cycle, and reflective meetings to examine power dynamics. These activities help differentiate advisory versus partnership roles and guide integration of lived experience inputs into design and dissemination.⁸ Strengthening PWLE-led organizations and creating opportunities for sustained involvement is essential. Valuing lived experience input helps address power imbalances and promotes collaboration.¹² Safe spaces for PWLEs engagement should facilitate constructive dialogue while ensuring psychosocial protection.⁶ In research on sensitive issues such as depression or interpersonal violence, PWLEs may face risk if their experiences become known. Risk minimization strategies include anonymized participation options, confidentiality agreements, access to support, and escalation pathways.¹⁰ Interdisciplinary approach linking researchers with clinicians, social workers, legal advisors, community organizations, and peer facilitators, can strengthen safety mechanisms and sustain trust. Adequate compensation is critical to avoid exploitation.⁵ Compensation should be fair, transparent, and clearly communicated. Communicating the impact of PWLE involvement reinforces their value and supports long-term engagement. Tools such as the engagement ladder (Fig. 1) provide a framework for planning and evaluating engagement. Used prospectively, it defines levels of involvement; retrospectively, it enables reflection on whether engagement deepened. Across our work, engagement ranged from informing and consulting communities in SMART mental health¹³ to advisory and partnership roles in ARTEMIS.⁸ Where PWLE groups are absent, systems can be built by embedding engagement within ongoing projects and leveraging existing networks.^4,8 Governments and funders can legitimize these efforts through sustained support.^2,4 Adherence to ethical principles-voluntariness, confidentiality, and non-exploitation- is essential for long-term engagement across diverse contexts.^4,5

In conclusion in India and other similar areas with limited mental health resources, where PWLEs lack formal organization, researchers should establish structured advisory mechanisms. Drawing on ARTEMIS and ANUMATI,^8,10 this includes clear terms of reference, holding regular meetings, documenting decision-making inputs, and ensuring continuity through facilitation support. Such structures promote accountability, reduce tokenism, and enable sustained engagement. Research communities should identify PWLEs across mental disorders and facilitate group formation with locally adapted guidelines. Training PWLEs strengthens their role as essential partners in the research process. Meaningful engagement, guided by levels of PWLEs’ involvement (see Fig. 1), enhances study relevance, improves participant buy-in and scalability. It also empowers PWLEs to contribute actively, fostering inclusion and ensuring research outputs reflect real-world needs, supporting impactful and sustainable research outcomes.

Contributors

The paper was conceptualised by Pallab K Maulik (PKM) in discussion with all the authors. Mercian Daniel wrote the final draft, which was reviewed and edited by PKM, Sandhya Kanaka Yatirajula (SKY) and Sudha Kallakuri (SK). All authors commented on a pre-final version of the draft, read and approved it.

Declaration of interests

The authors declare that they have no competing interests.