Case study (Equity and Patient Involvement): Paediatric diabetes

12 Nov 2026

Excellence in Clinical Audit Awards, part of Clinical Audit Awareness Week 2026, Equity and Patient Involvement joint runner-up

The Youth Voice Communications Project from the HQIP-commissioned National Paediatric Diabetes Audit (NPDA), which is managed by the Royal College of Paediatrics and Child Health (RCPCH), was developed to improve how national clinical audit findings are communicated to children and young people living with diabetes. It demonstrates how patient involvement can strengthen the impact of audits by ensuring that findings are not only reported to services but are also communicated in ways that are meaningful and empowering for the people whose care they reflect.

The project involved more than 50 children and young people, as well as siblings and parents/carers from RCPCH &Us, Diabetes UK young leaders, Breakthrough T1D youth ambassadors, diabetes operational delivery networks, diabetes youth clinics and diabetes youth groups.

Who is the project designed to support, and why was it needed?

The project was designed to support children and young people living with diabetes, their families, and paediatric diabetes teams across England, Wales and Jersey. It was developed in response to feedback from children and young people, who highlighted that information contained within NPDA national audit reports and data outputs used to support quality improvement in paediatric diabetes care could often feel overly technical, difficult to understand, and not designed with young audiences in mind.

The project also recognised the importance of ensuring children and young people had opportunities to influence decisions relating to their care and access information in ways that felt meaningful and accessible to them. 

The work was underpinned by principles from the United Nations Convention on the Rights of the Child (UNCRC), including children and young people’s rights to access information, participation, and the best possible healthcare.  

Projects like this are important because they help us feel less alone and show us that others have similar experiences.”

What did it set out to achieve?

The primary aim of the project was to provide age and stage appropriate information about the NPDA, whilst increasing understanding and awareness of the audit amongst children and young people living with diabetes and their families.

The project also sought to co-produce a range of resources for national, regional and local diabetes services. These included principles for communicating NPDA information with children and young people in ways that are age and stage appropriate, accessible and inclusive; an NPDA image bank for use in communications aimed at children and young people; and practical resources to support communication with children, young people and families. These resources included poster templates, leaflet templates, key findings templates, an audit explainer video, information for clinic waiting areas, and content for clinic appointment letters.

Children and young people would absolutely love to get more involved in projects like the NPDA, however the resources just aren’t always handed to us.”

In addition, the project aimed to develop a “What the PREM Results Mean for Us” output, using the principles established through the project to communicate audit findings effectively with children and young people.

The project also sought to share its findings, learning and the experiences of children and young people by hosting an online webinar for the NPDA community, presenting at NPDA and RCPCH conferences, and disseminating resources and learning across the NPDA, the wider diabetes sector and beyond.

When did the project start?

The initial project started in September 2024, with the first session in December 2024 and the final session in May 2025. Since then, the children and young people involved have continued to support the audit team through RCPCH &Us, contributing to ongoing work such as the development of the PREM dataset and presenting the project at the NPDA Annual Conference.

How did the project work?

The project began with a planning phase to identify what would be needed to successfully deliver the project in a way that was age and stage appropriate for children and young people with experience of diabetes.

A communications plan and youth-friendly promotional materials were developed to raise awareness of the project and the opportunity to get involved among children, young people, diabetes units and partner organisations.

An engagement stocktake of diabetes organisations was undertaken to establish key partnerships, inform organisations about the project and encourage them to promote the opportunity through their networks. Relationships were also developed with Diabetes Operational Delivery Networks to support self-referrals. As a result, 48 self-referrals were received from children, young people and families.

The project team mapped out the programme of activities, including session formats, locations and timings, with diversity, inclusion and accessibility at the forefront of planning. A combination of online and in-person sessions was delivered, including sessions with newly formed project groups and existing youth groups.

The referral process was managed through one-to-one conversations with children, young people and their parents or carers to answer questions, understand motivations for taking part and ensure participants were fully informed. This included coordinating session bookings, obtaining consent and distributing information packs. Practical barriers to participation were addressed by covering travel costs, providing accessible venues and offering food to support diabetes management.

Each session was carefully designed to meet the needs of participants. Activities were tailored to be age and stage appropriate, creative and engaging, while ensuring that audit information was shared in a positive and empowering way. A range of communication methods were encouraged, including drawings, voice notes and one-to-one discussions.

Through a series of sessions, children and young people explored how they currently access health information, what the NPDA means to them and how audit findings should be communicated. The discussions also highlighted inequalities in access to information and helped identify what children and young people need from audit communications. Working alongside a professional designer, they co-produced a range of resources and were given the opportunity to provide final input before the resources were launched on the RCPCH website and showcased at the NPDA Conference.

Did the project involve changes to processes in order to implement?

The project took a different approach to engagement than is typically seen in clinical audit work. It used design and creativity based sessions, facilitated by youth workers and underpinned by a rights-based approach to participation.

This approach placed children and young people at the centre of the project, ensuring that their experiences, development and learning informed every stage of the work. It also enabled them to play an active role in shaping the project by sharing decision-making power throughout the planning, design, development and approval of the final materials.

Did the project succeed and, if so, what is the evidence?

The project received extremely positive feedback from the children, young people and families who took part. Throughout the project, participants reported increased confidence, knowledge and a greater sense of agency. They developed new skills in design and volunteering, built friendships with other children and young people living with diabetes, strengthened their sense of identity and belonging, and played a central role in the successful launch of the co-produced resources.

Feedback from participants highlighted several key areas of impact. Many valued the opportunity to connect with others who shared similar experiences, with one participant commenting, “It is nice that I am with other diabetic people,” while another said, “It brings children and young people together to help each other and give advice to each other.”

Participants also reported a greater understanding of the NPDA and its purpose. One young person reflected, “I learnt a lot of new things I didn’t know about the NPDA and it was very interactive,” while another commented, “I have learnt about what NPDA is.”

The project was widely described as engaging, enjoyable and empowering. Feedback included comments such as, “It has been engaging and fun and I would participate again,” and “It was uplifting to know what is being done to help people.” Others highlighted the value of seeing how their involvement could make a difference, with one participant noting, “You learn that you are helping and keep it going.”

Overall, the feedback demonstrates that the project not only increased participants’ knowledge and understanding but also provided a positive and meaningful experience that enabled them to contribute to improving how audit findings are communicated to children and young people.

Other insights or learning points

The project generated valuable learning about how children and young people prefer to access diabetes-specific health information, highlighting the need for greater peer support and increased awareness of the audit through communications that are age and stage appropriate. Participants also shared why having access to this information is important to them and how it can help them better understand their care.

Children and young people emphasised the importance of being involved in audits and provided insight into the challenges they face when living with diabetes, as well as the areas where they feel they can influence change.

The project also demonstrated the value of involving children and young people directly in national audit communication and quality improvement work. Participants consistently highlighted the importance of feeling listened to, receiving information in accessible formats, seeing their experiences reflected in resources, and having opportunities to connect with others living with diabetes. The project also showed that children and young people are highly motivated to contribute to healthcare improvement when provided with meaningful opportunities and appropriate support.

In addition to achieving its original aims, the project helped build lasting relationships and created new opportunities for children and young people through its partnership networks. In 2025, children and young people involved in the project also presented the work to HRH The Princess Royal.

The project also generated benefits beyond its planned outputs. Children and young people developed peer support networks and friendships through their involvement, and some participants have gone on to become RCPCH &Us volunteers. These outcomes demonstrate the wider and longer-term impact of investing in meaningful involvement and co-production with children and young people.

Supporting materials

All of the resources developed through the project are available on the NPDA page of the RCPCH website: NPDA Youth Voice Communications Project resources. Further related resources from HQIP:

Interview: NPDA Youth Voice Communication Project

In this article, children and young people from the NPDA Youth Communications Project share, in their own words, what they learned from taking part and why having a voice in healthcare matters: Our Voice Matters: What We Learned from the NPDA Youth Voice Communication Project

Further resources from HQIP