Young people & research: Is it done right?

This blog was co-written with Robyn Challinor, a member of the Liverpool Young Person’s Advisory Group.

How long would it take for the sun to melt an ice cube the size of Earth?

The best questions come out of children’s mouths: I am lucky enough to be reminded of this every single day. The question above was from a 6 year old. I couldn’t answer it, but I could help him find out how to answer it. Part of my quest is to enable young people to ask more questions about medical research, and for these to be heard (and acted upon) by our research professions.

The number of children taking part in clinical research is increasing: in 2015, 42,678 children and young people (under the age of 16) in England took part in clinical research*. This is over three times more than in 2011. Over the same time period, the overall number of people taking part in NHS-based clinical research has remained pretty much the same or has even reduced, in some research areas. These numbers don’t include health-related research taking place outside the NHS (for example, in Universities, or commercially). I have still to find a figure for the total number of children and young people taking part in medical research in the UK, but one thing is for sure: medical research with children is only going to grow and grow.

The links between participation in research (eg. being in a clinical trial), engagement with research (raising awareness, information giving, debate and dialogue) and involvement in research (active contribution to research) are still not fully understood. There is often a grey area between what is clinical care and what is clinical research. The good news is that there are LOADS of fantastic initiatives and resources for young people out there:

Young people have come up with their own guidance & ‘Top Tips’ for being involved in medical research (cf. Involving Young People in Research) and have very definite views on the ethics of carrying out research in children (cf. Nuffield Council on Bioethics: Children and Clinical Research) and how they should be involved in the process.

So, our job is done, right?

Not quite…

Science, or how science works? Most young people we work with are science literate to various degrees. But they’re not necessarily aware of the processes of research. I spend a lot of time finding creative ways to explain how research works. This is a fantastic way of enabling natural inquisitiveness to flourish, and, although I think that pretty much any effort to engage young people with science is worthwhile, I would like to see more focus on engagement with the scientific research process, its social, ethical and political dimensions too – promoting enquiry rather than scientific knowledge per se. ‘How Science Works‘ is a fantastic curriculum initiative underpinning how science is taught in schools – could a similar initiative underpin all public engagement with young people?

Known unknowns and unknown unknowns. It might be self-evident that some young people will have low awareness of scientific research. They are also generally unaware that they can have a voice in research, through, for example, advisory groups such as GenerationR. We found this out through our Young People’s Opinions Underpinning Rheumatology Research (YOURR) project. Engagement with biomedical research needs to focus on this too: what can a young person take away from the engagement activity to enable them to express their voice? Who can they contact? How can they build on their engagement post-engagement?

Different worlds? Achieving the above depends on having a ‘holistic’ view of working with people, including young people. Sometimes the worlds of ‘engagement’ and ‘involvement’ collide (see my fellow Fellow Delia Muir’s excellent blog on this) – but both have much to learn from each other. We need to see their relationships as non-linear and mutually dependent. Our wires need to cross for engagement and involvement in research to advance. Some of our most powerful projects have worked in the space between these two worlds, drawing on methodologies from each. The Theatre of Debate’s ‘People are Messy‘ is a fantastic example of a joined up approach.

Make it fun… But with a serious edge. “What young person wants to engage with a dry old process?”, I hear you say. Anything can be made engaging, you just need the right tools and skills. Working in partnership is key to this: we have found that arts-led approaches, and working with existing community organisations, work really well. And, even more importantly, work in partnership with young people (and I don’t just mean ‘user-testing’) to develop your engagement and involvement. They bring with them oodles of creativity. Digital technologies are here to stay and young people can do more with them than I will ever know. That’s not to say that established approaches (eg. advisory groups) aren’t valuable – there is just plenty of scope to expand on them. Young people are now using their voice within advisory groups to change the way researchers engage with them.

Peer to peer interactions work well. One of our really successful projects (Our Health, Our Future – it won an award!) worked through drama and hands-on activities to engage 12-17 year olds with public health research. Younger students worked with each other, and with sixth formers (and our team, a playwright and some researchers) to devise public health research priorities for their communities. Including this peer to peer interaction as part of the whole project worked really well. The rise of the vlogger is also testament to this approach. It might seem scary, but losing a bit of control and letting young people ‘own’ their engagement can be constructive and effective.

Finally, the biggie: equity and access. Recent work on Science Capital shows that although young people in schools find science interesting, young people taking science post-16 still fall into the same social, ethnic and gender groups as 20 years ago. I couldn’t find any figures, but I’m guessing it’s a similar picture when talking about engagement and involvement of young people in research. So there’s an important role for engagement and involvement to address this issue. I don’t have the answers yet, but armed with my arsenal above from my experiences so far, I’m going to give it a go!

As Robyn says: current 18 year olds have been brought up with a stigma surrounding clinical research. Only now because of the changes in the curriculum, wide media coverage, and social media activity surrounding research (eg. fundraising campaigns for oncology patients that have gone viral on Facebook) younger people are opening up to the idea of not only being part of research, but questioning: is it done right?

*registered with the Children’s Speciality of the National Institute of Health Research (NIHR, the research arm of the NHS) Clinical Research Network (CRN)

image

Image credit: www.cutestfood.com

Advertisements