Involving care experienced young people in administrative data research: A mutually beneficial relationship

Sarah McKenna, an ADR Northern Ireland Research Assistant at Queen’s University Belfast, discusses a recently piloted workshop, which focused on involving those with lived experience of care in administrative data research.

“Nothing about us without us” is a well-known mantra that communicates the central importance of involving people with lived experience in research about them. Administrative data is a powerful tool for understanding entrenched problems, but it can’t tell the whole story. We need real people to help us understand the true meaning of the data and humanise the statistics. But as administrative data researchers, how good are we at doing this? I can’t speak for others, but previously my own report card might have read “could do better,” or “is easily distracted”.

Lots of things can get in the way of meaningful engagement from a researcher’s perspective: lack of time, lack of motivation, or lack of know-how. Perhaps the hardest of these to overcome is lack of motivation. It can be challenging to see the potential benefit or opportunities when we work with datasets, not people. But tokenistic attempts at involving people with lived experience risks damaging the reputation of academic research. People will see through it. Our aim is to develop an authentic, participatory model of working with care experienced children and young people.

The pilot workshop on 19 May, entitled Our Data, Our Research, Our Future, was designed and delivered in partnership with staff from the Voice of Young People in Care (VOYPIC). VOYPIC is an independent charity that provides help, support and advice to care experienced children and young people. This relationship was a key factor in the success of the pilot. VOYPIC supported the nine young people emotionally and practically, as well as guiding us on content and structure.

Mutual benefit

A key principle in public engagement is that of a ‘mutually beneficial relationship’ between the researchers and the individuals or communities getting involved in the research. We saw this in practice following our partnership with VOYPIC.

The research team came away with invaluable outputs: a wealth of feedback on our research; stories and experiences behind our headline results that render the research more authentic and understandable; a long list of future research ideas; the beginning of a relationship with a fantastic group of smart, funny, articulate young people; and challenges to improve our research, to name just a few.

Commenting on a particular result one said: “Really? You can’t just say that and leave it there.” Ouch. But what a great incentive.

The care experienced young people were able to develop skills in understanding and interpreting data. They now have ‘hard’ research evidence to support their personal experiences when speaking in other forums and to policymakers. And - crucially - they are shaping future research, which will be stronger for their participation in it.

What next?

One young person said, “what will you do with all this?” It’s a good question. Involving experts by experience comes with a responsibility to be transparent about what you can and can’t do as researchers. You need to be responsive and communicate, not just take what you need to rubber stamp your research.

The research team will work through the outputs and come up with a proposed action plan. The next workshop is already being planned, and will be an opportunity to report back as well as do ‘real work’ together. How this engagement looks and works will evolve, and may not be the same for all participants. The young people are in the driving seat. But there is exciting scope for developing a model that can be rolled out to other ADR NI projects – and, hopefully, to other projects using administrative data research as well.

We asked the young people if they wanted to work with us again. Yes, they all said – as long as the food is good.