New Delhi, ‘Experts by experience’, those who share lived experiences of mental disorders, can play a critical role in busting myths and biases, breaking silos of isolation and also help in policy decisions, multiple stakeholders said on Friday.
Researchers and professionals in mental health have long argued that People with Lived Experiences , who are recognised as ‘experts by experience’, can offer insights that enrich mental health research. “It is an important form of complementary knowledge that can help build better care systems, services and care pathways. “Mental health sits between two interfaces how I am in my inner world and how I am able to interact with the outside world, and thrive in my personal and social space. In recent times, research in India has turned to the ‘experts by experience’ group for shaping a research project’s design and ensuring effective implementation. Pallab Maulik, professor and director of research at The George Institute for Global Health India in New Delhi, and colleagues wanted to test whether an anti-stigma campaign leads to improvements in an urban slum community’s behaviour towards teens with a mental illness. The expert group comprised teenagers from the slums and collaborated with the researchers by suggesting strategies, including street plays and rallies, they deemed contextually relevant for conceiving and executing an adolescent-friendly anti-stigma campaign. The teen experts also advised creating short videos of the adolescents and games conveying relevant messages that could be shared through social media. Further, a magic show was agreed upon to promote help-seeking and tackle stigma, which the group felt would be favoured by teenagers and community members alike. Many myths, misinformation, misconceptions, bias and prejudices get reduced. “One of the biggest contributions of sharing lived experience is that it can help people realise that they are not alone. This article was generated from an automated news agency feed without modifications to text.
World Mental Health Day is observed every year on October 10 at the initiative of the World Federation for Mental Health since 1992 to raise awareness of mental health issues and reduce stigma. The theme for 2026 is ‘Lived Experiences Heard: Real Voices, Real Change’. A Lancet Psychiatry Commission on lived experience in mental health research, set up in June 2024, acknowledged that people with lived and living experience have long advocated for someone with a first-person perspective on mental health to change how research is done. 1.2 billion people globally were living with a mental disorder in 2023, nearly double the number in 1990, largely driven by anxiety and depression, according to a May 2026 study published in The Lancet journal. The study also noted that the prevalence of anxiety disorders in India increased by over 123 per cent between 1990 and 2023. During the same time period, cases of major depressive disorder increased from about 2,147 to nearly 2,799 per 100,000 population. The ‘ARTEMIS’ trial, described in a 2022 paper in the Journal of Global Health, formed an ‘adolescent expert group’ at each of the study sites in New Delhi and Vijayawada in Andhra Pradesh, who guided the researchers on project design, development and implementation.
Because there is no single definition that professionals agree upon, she added that mental health is difficult to be understood. She added that sharing helps people realise a mental illness is limited, can be treated and a person can lead a functional life therefore, institutionalisation would not be required.
“Someone who has experienced a mental health condition and the services associated with it, alongside caregiver perspectives, can help identify what works, where the gaps are and what kinds of interventions and policies are needed,” Dr Kavita Arora, child and adolescent psychiatrist, founding cohort, India Mental Health Alliance , told PTI. Lived experience can also contribute significantly to policy,” Arora said. Mental health encompasses physical, mental and spiritual aspects, unlike making a mind-body-spirit distinction,” Arora said. Clinical psychologist Dr Vandana V Prakash said the gap between theoretically framed policies and the ground reality is often exposed by a patient’s experiences. “For example, the waiting time, appointment scheduling, stigmas attached to visiting a mental health professional, being on psychotropic medications or gap in mental care facilities are all important while making systemic changes,” Prakash, senior consultant, Max Multispeciality Hospital in Vaishali, Ghaziabad, said. Mental health disorders are now the leading cause of disability overtaking cardiovascular disease, cancer and musculoskeletal conditions, it said. “We had to change our way of thinking immediately and start developing more video-based messages and resources with only limited written messages,” Maulik said. Maulik’s team wrote that a ‘co-creation’ of the intervention ensured it was “culturally and contextually relevant” to both the study sites and made it possible to engage adolescents with lived experience of mental disorders. “Co-creation simply as a research technique which used the creativity of the adolescents to value-add; instead, co-creation was viewed as a process that enabled participation from a position of equality rather than dominance, thus fostering democratisation,” they said. Openly discussing mental health issues, just like politics and fashion, helps normalise mental health, makes it less opaque and reduces the need for institutionalisation, the mental health doctors said. Clinical psychologist Prakash said, “When people with mental health issues speak openly about their experiences, they help create awareness. When people hear narratives from others whose experiences resonate with their own, it can create a sense of possibility: someone else has experienced something similar and is now able to live, work and speak openly about it,” Arora said. “That is how mental health can become decentralised,” she added.
Ahead of World Mental Health Day on Saturday, experts said those who have experienced mental disorders can also provide valuable cultural and contextual insights about their illness and suggest interventions likely to be successful with an affected individual.
“We had initially conceived comic strips as a primary media to share information about mental health.
However, adolescents who were part of the adolescent expert group told us that comic strips will not work as they prefer videos,” Maulik told PTI. Comics would require patience for reading, the adolescent expert group told him.
