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“More than just a data point”: involving people with lived experience in mental health research

Wellcome is running a series of Data Prizes, the first of which focuses on young people’s mental health in South Africa and the UK. In this post, our partner Social Finance explains why the prize has been designed to prioritise lived experience, and how we’re working with a group of young experts.

Birdwatchers lie on the ground to get a new perspective, looking upwards into the trees. 

Rebekah Williams

Because of the mud, you don’t usually birdwatch lying down. But Ollie and Nadeem agreed to try it to get a change in perspective. They both expressed a sense of calm and stillness being on the ground, looking upwards into the trees.

About this series

Spending time in nature can be beneficial for mental health, and Flock Together is a London-based birdwatching club for people of colour, building a community of mutual support. 

Credit:

Rebekah Williams / Wellcome Photography Prize 2021

Attribution, Non-Commercial CC BY-NC

What works for whom, in what contexts, and why? And how can data science support the development of the next generation of treatments and approaches to tackle anxiety and depression in young people worldwide? These are the questions we want to answer through Wellcome’s Data Prize in Mental Health.

The Data Prizes are a series of open competitions or challenges where participants use existing data to answer new questions. The first prize builds on Wellcome’s active ingredients work, which aims to understand what aspects of a mental health intervention makes it effective. It will bring together new multidisciplinary teams to explore the question: what are the ’active ingredients’ that make a difference in preventing, treating, and managing anxiety and depression in young people?

A key design principle of the Data Prizes is to place co-creativity at the heart; valuing lived experience and centring the communities we are working with.

Why is lived experience so important for research? 

Expertise within mental health research is currently very siloed, with most research happening in established academic institutions and missing the unique person-centred knowledge from those with lived experiences of mental health challenges. 

That’s why this prize has been designed to prioritise co-creativity and lived experience expertise. We are keen to actively involve those young people who are most likely to benefit from new research, to ensure we have the richest understanding of the issues we are trying to address and how they can be confronted.

We see lived experience as a legitimate and valuable form of expertise and want the Data Prize to be a leading example of how to make mental health research more collaborative. We believe it’s only through working in this way that we will be able to make long-lasting, impactful and relevant changes.

How are we embedding lived experience into the data prize? 

We have set up a youth advisory network comprised of young people who have experiences with anxiety and depression. It includes people from both the UK and South Africa, who will be involved in shaping and designing the prize at every stage.

I’m looking forward to bringing my lived and learned experience to the prize and hoping to make a difference for other young people with anxiety or depression.

Zakaria Martah, Johannesburg

Zakaria (Zak) is a project assistant for the Global Mental Health Peer network and a counsellor for young people with Type 1 diabetes. Zak is interested to see if the prize can help identify interventions that work for people with overlapping illnesses that can contribute to mental health problems. 

The network will help with crafting the evaluation criteria, developing communications and judging proposals. 

We also have lived experience consultants on our project advisory group, to ensure representation in all our governance structures, from strategy through to delivery.

What have we learned from lived experience so far?  

From researchers to educators, to practitioners in clinical and community settings, the network of youth advisors brings a huge range of perspectives, skills and experiences.

Earlier, during the set-up of the prize, we also ran a series of collaborative workshops with international groups of experts by experience, to ask them what they want us to prioritise. Participants emphasised the importance of the social, cultural, and systemic context, including indigenous knowledge. Emerging themes included: family and community networks, life transitions, marginalisation and belonging. They also stressed the importance of including lived experience early and at every stage, having an iterative process with feedback loops, and creating a culture of learning throughout.

I'm excited to work with other young people on this forward-thinking and more holistic approach to youth mental health.

Sayeeda Ali, London

Sayeeda is a trainee clinical psychologist, who is excited to see if the active ingredients of spiritual and religious beliefs, a sense of purpose, and a connection with one’s culture will be further explored within the prize.

What next? 

We are excited to see how the expertise of the youth advisors continues to shape the Mental Health Data Prize as we work towards the launch in April 2022. 

The involvement of lived experience is just one of the ways we are trying to help build a more multidisciplinary mental health research community. If you’re interested in finding new ways of working, and would like to be a part of the community involved in the Data Prize, let us know by registering your interest here.

If you are from an organisation that holds data that could be relevant for the prize, or would like to get in contact with the team, write to us at nick.turner@socialfinance.org.uk.

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