Making research more people-centred

One of the key aims in the field of community and public engagement (CPE) is for people and communities to be involved in every stage of research. This means from the very beginning: finding the problems that the public need answers to and designing the entire process alongside these publics. Quicksand is an interdisciplinary consultancy that specialises in user-centred innovations. Based in India, its expertise lie in emerging economies, and it supports a wide range of organisations to design innovative and exciting practice with people at their core.

Avinash Kumar, one of the co-founders of Quicksand, spoke to attendees of the 2018 Wellcome International Engagement Workshop about their work on people-centred mental health research (MHR) in India. Commissioned by the Wellcome Trust Public Engagement department, Quicksand were given the brief of exploring the landscape of MHR in India from the perspectives of the public, with the aim of providing insights into how people get involved in MHR, who the people who do get involved are, why others might not be involved and what could be done to remove any barriers faced. By doing this, the Wellcome Trust hoped to have a clearer picture on how to make sure MHR in India, and indeed worldwide, as inclusive and accessible as possible, and to pave the way for truly participatory MHR.

Quicksand researched the topic of MHR in three main ways:

1. In-depth interviews with a variety of stakeholders.

Key stakeholders were identified through primary and secondary research, including medical practitioners, researchers, both early in their career and more experienced, community engagement practitioners, alternative therapists and people with lived experience of mental ill-health.

2. Facilitation of collaborative spaces

This involved providing a supportive and safe space and platform for young people with lived experiences, and grassroots organisations working on the ground, to share stories safely and sensitively.

3. Rapid prototyping and testing of ideas

As gaps in Indian MHR emerged during Quicksand’s research, they were able to quickly develop ideas and concepts which could lead to the development of a new product or service, or a change in a system, that could go some way to solving the problems. Research participants played a collaborative role in this development and testing stage.

Outcomes

A number of key insights came out of this participatory, iterative process. For example, they found that there is a lack of awareness about mental health in some communities, and that some Indian languages lacked the vocabulary to adequately describe mental illness. This could impact the ability of an individual to seek help if they are suffering from a mental health problem themselves. Furthermore, if somebody did seek help, major gaps in the treatment landscape mean they may struggle to get meaningful support. On the topic of MHR, Quicksand found that researchers struggled to access those suffering with mental health problems, due to barriers such as geography, funds, language and literacy, as well as institutional bureaucracy.

The team decided to hone in on young people specifically, and through their research put together maps of stakeholders in the ‘mental health ecosystem’ of a young person, including their informal and formal support systems, technological platforms, public resources and community interventions. They also sought to understand potential causes of mental health problems amongst the young population of India, and possible incentives that could be used to involve young people in MHR.

All of this information is a vital resource for mental health researchers in India. They can now have a greater understanding of the needs of the young people they are seeking to access, the platforms they use, the things that might be causing their problems and more. Quicksand suggested a number of steps Indian mental health researchers could take to meaningfully engage with the youth population, which included the development of a research participation digital platform and awareness and research participation events.

This case study shows how human-centred design processes can help researchers and those working in engagement to understand their audience better and adapt their research and processes so that they are truly serving the needs of the population. It also allows them to involve the communities they seek to serve at every stage, from program design to ideation and output design.

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