08 May 2026

Listening Deeply: Involving children in shaping the future of health and care

Over the past 3 years, the NIHR Innovation Observatory has led some of the internationally-first horizon scans in child health. Our work has covered MedTech and medicines, as well as research methodology and unmet needs.  

Involving children themselves in research projects that concern children has been a central commitment to us. We have particularly sought to involve children who are younger than those usually engaged in research project steering groups, and children from groups often underrepresented in research.  

The children have been extremely generous in helping us to view topics from their perspectives. This, in turn, has enabled us to construct scans more meaningfully, and integrate foresight thinking into the topics – ensuring projects include elements important to them. 

From this involvement work, we have today launched a video to share key messages for others who are considering involving children in co-leading research. 

 

“We’re kids and we’re the real experts in what matters to us.” 

 

Children are living the realities, and health technologies, that we do research into. Children are not small adults, and their perspectives of the world are different to those of adults. Physically, cognitively, socially, emotionally – they literally perceive the world from a different point of view. 

This means that children’s contributions are unique. While involving parents is important, children’s views cannot be replaced by proxies. Listening, deeply, children themselves, and respecting their lead and expertise, is essential. This takes time, and commitment. 

 

“We don’t think like you… and maybe our ideas don’t follow your plan.” 

 

Much of current innovation, horizon scanning and foresight work remains grounded in adult views and assumptions. Often it is adults who define the problems, identify the emerging innovations, and decide what outcomes matter – often making decisions that impact children’s health and care for years to come. 

Children’s perspectives of the world being different, their views on the situation – and what aspects of the situation are important – also differ. These differences in perspectives can mess up adults’ plans – however, our strong belief has been that this diversity of perspectives is much need. Instead of the difference being a challenge to be managed or navigated, it is an opportunity for adults to enrich their views and change the plans. 

 

“We want somewhere that feels like it’s for us.” 

 

Much of involvement literature emphases the importance of the place where involvement happens. How a space can make people feel comfortable, or not. How it can help them feel able to share views and make contributions, or not. This is also true with children. 

It became clear early on that meaningful involvement start with carefully thinking about the spaces where involvement happens. It starts by meeting children where they already are, in their communities, their groups, and the places where they already feel comfortable and are already having a say. 

Through working with groups connected to organisations including the Young Person’s Advisory Group North England, Newcastle Foodbank and Great North Youth Forum, we saw how much this matters. 

Participation is not just about process. It is about trust and familiarity with the space, and how that makes people feel it is safe to contribute. 

 

“It needs to be fun.” 

 

Fun is a key ingredient in children’s lives, while also often underestimated and viewed as optional, even frivolous, by adults. Adults can view fun as a distraction from “proper work”. 

For children, fun is a gateway to participation. It is the way to get involved, to work through ideas, to share, and to contribute. Fun is essential for serious work! 

Fun also helps to make a space feel safe and comfortable. Fun can encourage openness, and build confidence to share different ideas. All this can lead to richer, more honest insights, something that more formal approaches can struggle to achieve. 

 

“We can plan research with you – that’s where the magic happens.” 

 

We learnt that the key shift needed for better involvement of younger children is not from exclusion to inclusion, but from participation to true partnership. 

Children and young people are not just future beneficiaries of innovation. They are key contributors in how possible futures are imagined, and actors in how the actual future will unfold. 

Taking their views seriously, and shaping research plans with them, brings creativity and innovation that is otherwise hard to achieve. 

 

From listening to doing 

Building on this work, alongside the short video, we are working on a practical guide to support researchers, policymakers and organisations to work more meaningfully with young children in horizon scanning, foresight and innovation. 

Together, these are not cook-book solutions, but an invitation to bring younger children into co-leading research – as powerful partners. 

 

Looking ahead 

As we mark National Children’s Day, there is an opportunity to reflect not just on outcomes for children and young people but on how we involve them in shaping those outcomes. 

If we want a future health and care system that truly works for them,
they need to be part of shaping it. 

Not occasionally.
Not symbolically.
But from the start. 

 

Continue the conversation 

To explore this work further, watch our animation (produced by Yellow Mouse Studios Ltd)

With thanks to Young Person’s Advisory Group North England, Newcastle Foodbank and Great North Youth Forum for their collaboration in this work.

Blog written by Emily Hunter, Research Assistant, NIHR Innovation Observatory and Niina Kolehmainen, Professor in Child Health Research, Newcastle University

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