Shaping better research from the start

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.

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.

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.

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.

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.

“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

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