Young people to help citizen science project

Ella Rhodes reports on the Youth LIVES project.

A new citizen science project will ask young people with experience of mental health problems to help identify gaps and priorities in research in this area. Run by academics at the University of York, citizen science group The Parenting Science Gang, and charities including The Mental Health Foundation, the Youth LIVES project will launch this autumn.

The project will begin with a series of online Q&As between young people and mental health experts. Dr Sarah Knowles, who works in health services research with a particular focus on mental health, is leading the project. She told me that it aims to give young citizen scientists an understanding of the kinds of research currently being done and generate ideas for studies from this. Groups of young people will be teamed up with researchers to help them to co-create studies, being encouraged to be active in the research itself.

Knowles, Research Fellow in Knowledge Mobilisation from the Cochrane Common Mental Disorders Group at the University of York, is also collaborating with Leaders Unlocked, a London-based organisation which specialises in supporting young people to get involved in issues which concern them, including education and justice. In the field of knowledge mobilisation, Knowles explained, there is a focus on developing evidence that is both useful and used – this is done by working with people who will use the information, understanding what they need and co-creating meaningful work.

‘If you go into this work assuming there’s a nice research-shaped gap in people’s minds that you can just fill, you’ll be disappointed!’ she said. ‘People have their own opinions, their own knowledge, and they interact with evidence more critically than we tend to give credit for.’

Knowles was inspired to launch the project after working on a Cochrane Mental Health Children and Young People Satellite, led by Associate Professor Dr Sarah Hetrick (University of Auckland). Hetrick had been working on co-producing priority outcomes for a systematic review and asked Knowles to run a similar study running online workshops with people aged 18 to 21 asking what they would prioritise in a systematic review of interventions for self-harm. Knowles said their feedback blew her away. ‘For example, straight away they said that reduction in self-harm shouldn’t be the number one priority, because actually recovery and relapse are “a wiggle” not a straight line (their word!) and because this was focusing on the consequences not the cause. They wanted to focus on emotions and coping skills. They also had a much more holistic view – it wasn’t just about changing the individual behaviour, but understanding the context of shame and stigma around self-harm, and so the need to change the environment and attitudes around it.’

Knowles said this made her even more keen to work with young people and involve them throughout the work, rather than just asking for feedback on a single aspect. ‘I’m really keen to see how a citizen science way of working compares with the things we’d typically do. So far, I think there’s a much bigger focus in citizen science on the activity itself being meaningful and valuable – so does the young person learn a new skill, or earn something for their CV, or just have a really fun time?’

She added: ‘In health involvement, we tend to focus on what the researchers can get from the people involved, rather than thinking about how to make it a rewarding experience for them.’  

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