Evidence Hub

Developing the Northern Youth Research Partnership to strengthen youth-led approaches in health and social care research: Summary of learning and outcomes

What is the issue?

Children and young people are under‑represented as partners in health and social care research, even though their experiences are essential for producing relevant, high‑quality evidence.

Most involvement structures are designed for adults, which means they rarely support meaningful, early or diverse involvement from young people.

As a result, involvement is often inconsistent or tokenistic, and many young people, especially those from underserved backgrounds (e.g. care-experienced, neurodivergent or those with long-term health conditions), are least likely to be heard.

In the North East and North Cumbria, there is a strong focus on tackling health inequalities affecting children and young people. Although some advisory groups exist, they often work independently and do not reach the full diversity of young people across the region.

This leads to uneven opportunities and no clear pathways for many young people to influence research. Evidence shows that young people can contribute meaningfully when approaches are relationship‑based and shaped around their needs, but these methods require time, trust and long‑term support, conditions that traditional research systems rarely provide.

Together, this highlights the need for a coordinated, youth‑led approach that can widen participation, build confidence and skills, test age‑appropriate methods and create the foundations for long‑term, equitable involvement of children and young people in research.

Developing a regional, youth-led partnership

We set out to change this by developing a regional, youth‑led partnership that creates more opportunities for diverse young people to share what matters to them and get involved in research.

This programme of work was developed by young people, VCSE partners and researchers. It was designed to address the lack of a region‑wide, young person‑led research partnership in the North East and North Cumbria and to explore how young people can be supported to influence health and social care research from the earliest stages.

What did we do?

Our development work ran across three phases, supported by ongoing evaluation.

In Phase 1, we built the partnership by bringing together project leads, VCSE partners and six Young Advisors, supported by 29 young people. Together, we shaped how we wanted to work and build confidence as a team.

In Phase 2, young people led workshops with 72 peers, aged 10-24, from diverse backgrounds to explore what matters most to them. We also tested creative, age‑appropriate methods with 11 Year 5 pupils.

In Phase 3, we reviewed our learning as a team to develop our ideas and spoke with researchers and involvement professionals to understand what helps and what gets in the way of meaningful, long‑term youth involvement.

Youth Focus North East evaluated our programme of work throughout via surveys, feedback, interviews and focus groups with young people and delivery partners.

Key learning from this work

• A regional youth‑led partnership can work in practice, with young people, VCSE partners and researchers working together as a confident, collaborative team. Informal, conversational learning helped everyone take part comfortably.
• Young children can join research conversations when activities are creative and age‑appropriate.
• All young people need clear language, friendly spaces and flexible ways to get involved.
• Identified priority topics broadly included support for long‑term conditions such as Type 1 diabetes, mental health, autism and ADHD, experiences of social care, nutrition and physical activity, vaping and financial pressures.
• Young people told us they often don’t recognise the term ‘health and social care’ beyond a subject in school and/or fully understand what research is, so clear language, information and time to build relationships are essential.
• Researchers value youth involvement but face barriers such as limited funding, tokenistic or ‘tick-box’ processes, challenges paying young people for their contribution and difficulty connecting with diverse groups. They stressed the need for long‑term relationship-based approaches, better joined-up infrastructure and clearer pathways into involvement.
• Evaluation outcomes showed that young people found the partnership meaningful, enjoyable and confidence‑building. They developed leadership and project skills, and many said they had learned more about health and social care research and wanted to stay involved longer term.
• Some challenges included the need for more frequent meetings, some uncertainty caused by the flexible youth-led style and digital or physical barriers to staying connected over a large geographical area.
• This learning fed into our recommendations for a relationship‑based outreach model to guide future work and strengthen youth involvement across the region.

Why is this important?

The outcomes from this work show the meaningful role young people can play in shaping health and social care research, especially when they are well supported and informed. They highlight suggested pathways and clear opportunities for research organisations to embed and strengthen youth‑led approaches in everyday practice, from governance and priority‑setting to early‑stage co‑design and beyond.

Young people also identified the issues that matter most to them, giving researchers a clearer sense of where future work should focus. This work shows how to create the environments, relationships and processes that enable more children and young people to get involved and shape research that affects their lives. Overall, it demonstrates that young people can make valuable research contributions, and that building the right structures now can lead to more relevant, inclusive and impactful research over time.

The learning from this programme can also be applied more widely to strengthen youth‑led co‑design in other settings, such as health services and schools, by helping organisations create clearer pathways, more inclusive environments and more meaningful roles for young people.

How were members of the public involved in this work?

This was a young person-led programme of work with young partners involved in every stage of work from initial development of our bid ideas through to sharing and co-presenting outcomes. Young people acted as co-designers, facilitators and leaders. They shaped the programme’s priorities, methods and outputs.

Young partners shaped the partnership’s identity and direction, ensuring the work remained relevant to lived experience and responsive to diverse groups. Their insights underpinned our resulting outreach model, evaluation approach and recommendations for future research.

Young partners co-authored our evaluation and final project reports, co-designed our recent shared learning event in partnership with the North East and North Cumbria’s Integrated Care Board and presented our work to attendees.

Young partners and illustrators from More than Minutes also worked together to design and produce two infographics visually summarising 1) our approach and 2) our relationship-based outreach model.

Infographic: Our approach to developing the partnership

Recommendations for policy and practice

Young people told us that many of them don’t know what health and social care research is, why it matters or how they can get involved. If we want a wider and more diverse group of children and young people to take part, we need to tackle this lack of familiarity and make involvement easier, clearer and more welcoming.

Our overarching recommendation is for research organisations to develop and embed greater outreach activity as standard, alongside a staged pathway that helps young people move from first hearing about research to feeling confident, informed and able to take part as partners.

This pathway focuses on:

• Early outreach: going to where young people already are, such as schools and youth groups
• Clear, accessible explanations: helping young people understand what research is and why their experiences matter
• Simple pathways into involvement: offering easy, low‑barrier routes into advisory groups and involvement networks
• Reaching diverse groups: working with trusted community partners and offering flexible ways to take part
• Sustained relationships: building long‑term connections rather than one‑off projects

This developing model focuses on building sustained long-term pathways from research awareness → understanding → engagement → involvement, rather than being connected to one specific research project or programme.

Infographic: Our relationship-based outreach model

What happens next?

We recently held a joint shared learning event with the North East and North Cumbria Integrated Care Board’s Research Engagement Network (REN) to outline our recommendations, further develop next steps and explore how our learning can be embedded into future REN and other activity. We are now bringing together the outcomes from this event and preparing further outputs that share our approaches and learning.

We are also building this learning into the next phase of the NIHR ARC NENC research programme, and across wider NIHR infrastructure, making sure young people are supported to have a genuine voice in health and social care research. This includes strengthening partnerships, widening access to involvement opportunities and developing clearer pathways for young people to move from awareness into active research roles.

Alongside this, we are sharing our findings with wider partners to support the development of young person-led approaches. Ongoing collaboration across local and national networks will help ensure this work continues to develop and benefit more diverse groups of young people.

Find out more

Read the research paper on NIHR Open Research

For more information, or to request a high resolution version of the infographics, please contact Chief Investigator Dr Angela Wearn angela.wearn@newcastle.ac.uk

Acknowledgements

This project was co-led by the NIHR Applied Research Collaboration North East and North Cumbria and Investing in Children, and involved partners from:

• Youth Focus NE
• NE Youth
• Cumbria Youth Alliance
• Great Northern Children’s Hospital Young People’s Advisory Group North East (YPAGNe)
• Newcastle University
• Lancaster University

This project was funded by the National Institute for Health and Care Research (NIHR) under its Programme Development Grant: Developing Diverse and Inclusive Public Partnerships Programme (NIHR207105).