https://www.gosh.nhs.uk/news/shaping-better-research-from-the-start/

Shaping better research from the start

22 Jun 2026, 4:12 p.m.

A view from above of adult hands playing with some scientific models and the top of a child's head. The child has bright white hair and is wearing a lab coat. You can't see their faces

At GOSH, patient and public involvement is helping researchers to ask the right question, right from the start. By involving patients, families and young people early, studies are being shaped in ways that make them more relevant, inclusive and grounded in real-world experience.

Challenging assumptions

In a study exploring how caring for a child with complex health needs affects mothers’ employment and income, early conversations with parents revealed important considerations:

  • factors influencing income beyond what data could capture
  • limitations in how family structures are represented
  • concerns about how findings might be interpreted

These insights are now informing how the research is designed, analysed and communicated -ensuring a more accurate and responsible approach.

Designing trials with families in mind

In planning a new immunotherapy trial for children with leukaemia, engagement with families highlighted key priorities:

  • treatment effectiveness and long-term outcomes
  • the impact of treatment on daily life
  • concerns about pain, anxiety and practical burden

These insights are directly shaping trial design - from delivery methods to patient-facing materials - ensuring the study reflects what matters most to families.

Improving research participation

In the Late Effects Study, young people helped refine how research participation is organised and communicated, including:

  • how appointments are structured
  • how studies are explained
  • how participants are recruited

Their ideas - from clearer messaging to creative recruitment approaches - are helping make research more accessible and engaging.

The impact

Early patient and public involvement and engagement (PPIE) helps researchers:

  • identify blind spots
  • refine research questions
  • design more inclusive and realistic studies

Ultimately, it leads to research that is better aligned with the lives of the people it is designed to benefit.

Because when you involve people at the start, you build stronger research from the ground up.

What did families have to say in our sessions?

“The trauma of 52 injections… is too high.” Parent carer, immunotherapy Patient and Public Involvement survey

“There’s either something else going on… or it’s not quite as simple as the nerves being there and looking fine.” Parent, Hirschsprung Connect discussion group

“Parents consistently emphasised that cure and long-term survival were the outcomes that mattered most.” Research team reflection, immunotherapy trial Patient and Public Involvement

Collage of PPIE pictures for PPIE impact report
"By working alongside our PPIE community, we make sure that real-life experiences guide every step of the research journey."

A year of highlights and impact

Our Highlight Report shines a spotlight on some of our brightest and best work in 2025-26. Our Impact report brings together a series of case studies and reflections that showcase the breadth and depth of PPIE across our organisation. They collectively demonstrate how well planned involvement enables constructive challenge, strengthens study design, supports effective delivery, and improves how research findings are communicated and shared.

Take a look inside our latest reports

The PPIE team at GOSH is supported by our NIHR GOSH Biomedical Research Centre

Building the next generation of paediatric research leaders

From early career clinicians to emerging scientists, the NIHR GOSH Biomedical Research Centre (BRC)’s Academic Training Weekend is shaping the future of paediatric research - bringing together talent, expertise and ambition from across the UK.

Bagri family philanthropy enables UCL study into rare childhood neurological condition treated at GOSH

A generous donation from the Bagri family will underpin a landmark study into gene-editing treatments for Dihydropteridine reductase deficiency (DHPR deficiency), an ultra-rare childhood neurological condition, treated at GOSH

Creating communities and lasting involvement

At GOSH, patient and public involvement and engagement (PPIE) builds lasting relationships and communities that shape research over time.

Penguin chick named after GOSH ward to celebrate London Zoo partnership

A Humboldt penguin chick that hatched on 30 April at ZSL London Zoo this year has been named Mildred, celebrating the start of a special partnership between the Zoo and Great Ormond Street Hospital for Children GOSH.