From complex science to clear communication

Across multiple projects at GOSH, patients, families and young people are playing a vital role in transforming how research is communicated - turning technical information into something clear, accessible and meaningful.

Whether reviewing patient information sheets or co-writing plain English summaries, patient and public involvement and engagement (PPIE) contributors are helping researchers ask a crucial question: Does this make sense to the people who need it?

In one gene therapy project, collaborators worked closely with researchers to reshape how complex concepts were explained - refining language, simplifying metaphors, and improving clarity. The result was a far more accessible and engaging explanation of advanced science.

Similarly, young people involved in reviewing materials for a rare epilepsy study challenged tone, layout and wording - leading to clearer, more reassuring and more inclusive information.

Feedback often goes beyond content. Patients and young people consider:

• tone (“too formal” vs friendly and approachable)
• structure (clear sections and shorter sentences)
• visual design (use of colour, layout and imagery)

These changes might seem small, but together they transform how information is received - helping people feel informed, confident and respected.

Clear communication is especially important in situations where families are making important decisions about care or research participation. For example, work to co-design new gene therapy information resources highlights this clearly. Families identified the need for:

• earlier access to clear, structured information
• visual and interactive resources
• real-life insights from other families

These insights are now shaping a new generation of patient-centred materials.

When patients and families help shape communication:

• understanding improves
• anxiety is reduced
• trust is strengthened

Most importantly, people feel able to engage with research on their own terms because good communication makes concepts accessible to everyone.

“GOSH YPAG doesn’t just review documents; they challenge your thinking and reshape the project…Their questions made the project clearer, more focused, and more honest.”
- Dr Eva Ioannidou, paediatric trainee and honorary lecturer based at the UCL Great Ormond Street Institute of Child Health, REMEDI Project

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