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.”
- Researcher, REMEDI Project

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