Creating communities and lasting involvement

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

Groups like Hirschsprung Connect show how ongoing involvement can transform research. By bringing together families with lived experience, researchers gain deeper insights into:

• long-term challenges beyond initial treatment
• priorities for future research
• gaps in understanding that need further exploration

These conversations have already led to:

• new research collaborations
• funded projects
• plans for wider engagement through events and awareness initiatives

Involving patients and families in ongoing groups allows research to evolve alongside real-world experience.

Participants don’t just give feedback, they:

• shape research questions
• inform study direction
• help translate findings into action

PPIE also plays a vital role in research funding.

Lay panel members involved in funding decisions help ensure that:

• research is relevant and meaningful
• proposals are clear and accessible
• decision-making is fair and transparent

Their contributions strengthen the quality and credibility of funded research.

PPIE improves research and benefits the contributors.

Participants report:

• increased confidence
• new knowledge and skills
• a stronger sense of contributing to meaningful change

When PPIE becomes ongoing and embedded:

• research becomes more responsive
• communities feel valued and heard
• partnerships continue to grow over time

“This has been an invaluable experience in helping us better understand the needs of the community… we are keen to continue working closely with the community.”
Researcher, Hirschsprung Connect project

“We have found this so valuable and have gained so much insight from yourselves and the other families.”
Hirschsprung Connect Discussion Group member

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