Involving historically excluded groups: How we’re co-producing data-driven research with care experienced young people

In this blog, Elizabeth Nelson and Dr Sarah McKenna look back on two years of working with a group of care experienced young people and reflect on what they have learned so far. Elizabeth is Public Engagement, Communications and Impact Manager and Sarah is a Research Fellow, both based at the Administrative Data Research Centre Northern Ireland (ADRC NI).

“Based on the flyer? I wouldn’t have come at all.”

It was our second workshop with a group of care experienced young people. This session was part of a wider co-production project with Voice of Young People in Care (VOYPIC), a charity that promotes the rights and views of children and young people with lived experience of care in Northern Ireland.

We had just finished a prioritisation exercise, where the young people categorised potential research questions into three colours: green (let’s do this), amber (maybe) and red (let’s not bother). They also suggested their own research priorities, based on previous conversations about the data that is available to researchers and what it could tell us about life in and after care.  

How not to write a recruitment flyer is just one of the many things we have learned over the following two years.

Learning by listening: our collaborative journey with VOYPIC and the Data Research Advisory Group

In partnership with VOYPIC, we’ve now successfully delivered eight workshops with groups of care experienced young people, who’ve delightfully named themselves DRAG: the Data Research Advisory Group. What started as an exploratory pilot session has grown legs, becoming an established way of working.

We are deliberately led by the young people – in their choice of venue, their choice of catering, their choice of focus (insofar as the data will allow), and their choice of activity. They let us know what they like and when things work, and when they don’t.

In the first workshop we started with the basics of understanding administrative data and statistics, and presented some initial analysis. During the second, the young people completely flipped the angle and narrative of an entire package of Economic and Social Research Council-funded research to focus on positive outcomes. In later workshops, they worked on ‘translating’ an academic paper written by the researchers into something engaging and accessible to the people it really should be aimed at: the care experienced community and those advocating for change on their behalf.

Along the way, ADRC NI and VOYPIC have documented what has worked (and what hasn’t), what is crucial for a successful involvement programme with historically excluded groups, and how this work has made a difference in the lives of the young people – and in all of ours as well. One concrete positive impact has been the development of a successful internship programme for care experienced young people within the ADRC NI offices at Queen’s University Belfast, which will be delivered annually.

Partnership working is key. None of this would have worked without VOYPIC. Their support has been invaluable, from getting the young people in the room for the first time, to guiding us on how to structure and deliver the sessions. It’s been crucial for the young people – we are talking about difficult subjects like mental ill-health, self-harm and suicide – so they have trusted people there to support them before, during, and after each session.

Decision making as a two-way process

Also vital is the principle of mutual benefit. At ADRC NI we are sold on the benefits for research of involving experts by experience – but what do they get out of it?

Decision making is therefore being shared with the experts by experience, including what research should be conducted with the available data and how it should be framed and presented. This might feel tricky for researchers to let go of. But it allows the experts by experience (whether they are young people or not) to feel genuinely heard: it’s their data, and therefore their voice matters. It also means that with their input, the data and the resulting research have a better chance of impacting on issues that matter to them.

This approach is not always plain sailing, and it requires pragmatism and compromise. We have learned a lot along the way, and this is informing the roll-out of the approach across other ADRC NI projects.

Find out more

We’ll be presenting this work at an upcoming event as part of the Office for National Statistics Research Excellence Series on Thursday 9 May, where we’ll be able to go into more depth about the project and answer questions. We’d love you to join us – you can book a place now.