Working together to transform research

At Great Ormond Street Hospital (GOSH), patient and public involvement and engagement (PPIE) is an integral part of how research is done and not an afterthought.

Across our 2025–2026 Impact Report, one message is clear: when we work alongside patients, families and young people, research becomes more relevant, more effective, and more meaningful. From shaping study design to improving how findings are shared, lived experience is making a real difference at every stage of the research journey.

Research often seeks to answer complex questions but those questions only truly matter if they reflect real life. By involving patients, families and young people, we ensure that research:

• focuses on what matters most to those affected
• reflects real-world experiences and challenges
• communicates clearly and builds trust

Across this year’s work, PPIE has helped researchers strengthen study design, improve delivery, and rethink how results are shared.

• Improving research from the start - Early conversations with parents and young people are helping researchers identify gaps, refine methodologies, and avoid assumptions before studies even begin.
• Making complex research understandable - From gene therapy to rare neurological conditions, patients and young people are transforming how research is explained - improving clarity, tone, and accessibility.
• Building trust in research and data - Open conversations about privacy, safety, and transparency are shaping how researchers communicate about data - helping to build confidence and trust.
• Creating lasting partnerships - PPIE at GOSH is not a one-off activity. Ongoing groups, networks and collaborations are building communities that continue to shape research over time.
• A culture of collaboration - Our report shows that PPIE is most powerful when it is embedded throughout the research process and not just at key moments, but continuously.

Researchers gain new perspectives while patients and families influence meaningful change. Together, we create research that is not only scientifically robust, but grounded in real life.

As we continue to grow and strengthen our PPIE approach, our ambition is simple: to ensure that every research project benefits from the insight, expertise and lived experience of the people it is designed to serve.

Because the most impactful research isn’t done for patients and families - it’s done with them.

Our programme of PPIE at GOSH is supported by the NIHR GOSH Biomedical Research Centre.