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The Northern Youth Research Partnership: Supporting young people to understand and shape health and care research

In this blog, NIHR ARC NENC Research Fellow Angela Wearn outlines how a new youth‑led partnership for our region is helping more young people understand and shape health and social care research. 

Children and young people have a right to be involved in decisions that affect them, but many don’t know what health and social care research is or how to take part. They are under‑represented as partners in health and social care research, even though their experiences are essential for producing relevant, high‑quality evidence.

In addition to this, 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.

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.

Developing a youth-led partnership to drive change

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

The work took place in three stages: building the partnership, listening to wider groups of young people, and working with researchers to understand how youth involvement can be better supported long‑term.

A steering group of six Young Advisors, charity partners and researchers led the project, supported by a wider partnership group which included 29 young people. Together, we formed the Northern Youth Research Partnership.

Young partners ran adult‑free workshops across the region with 72 peers, including care-experienced young people, LGBTQ+ young people, those with long-term health conditions/disabilities and those living within in socio-economically disadvantaged areas.

Younger children took part in creative sessions to test age‑appropriate methods. We also spoke with researchers and involvement professionals.

This approach demonstrated that younger children can join research conversations when activities are fun and creative, and that all young people need clear language, friendly spaces and flexible ways to take part.

Priority topics for research identified by children and young people included long‑term conditions, mental health, autism and ADHD, social care, vaping and financial pressures.

The researchers we spoke to strongly supported youth involvement but highlighted barriers such as limited funding, payment challenges and difficulty connecting with underserved groups.

Young partners and illustrators from More than Minutes worked together to design and produce this infographic visually summarising our approach.

Our approach: What we did and why it works

Shaping a practical plan

These insights shaped a new, practical plan to help research organisations connect with young people through trusted people and places and support their journey from first hearing about research to becoming involved as partners.

You can read more about the recommendations, here.

We also developed an infographic to illustrate some of the key recommendations from our work

Outreach and engagement: How can we better involve young people?

What happens next?

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.

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 other activity. We are now bringing together the outcomes from this event and preparing to share our approaches and learning more widely.

Read a plain language summary and recommendations from this work on our Evidence Hub: Developing the Northern Youth Research Partnership: Strengthening youth-led approaches in health and social care research – ARC

Read the research paper on NIHR Open Research

For more information, please contact Chief Investigator Dr Angela Wearn angela.wearn@newcastle.ac.uk