Patient and public involvement and engagement

PPIE can improve all stages of study design and delivery. It can help to strengthen funding applications, identify study design issues earlier, ensure a better experience for participants, and support you with your regulatory requirements.

There are many benefits to PPIE:

• research is more relevant to CF
• study design is acceptable to people with CF 
• study information is more accessible
• informed consent process is clearer
• participants have a better experience of research. 

We have heard overwhelmingly positive things about our PPIE process from both sponsors and people with CF. Sponsors gain invaluable insights that can inform their clinical trial plans, making trials more attractive and feasible for people living with CF to take part in. People with CF have said they feel valued and appreciated having the opportunity to help sponsors and contributing to potential advances for future CF generations.

We gained real lived experience from people with CF focused specifically around our questions. The people that attended the focus group were engaged, open and brought extremely relevant experience and knowledge to the table. The focus group was invaluable and will support the future of our project.

Project Lead, Drug Discovery Syndicate

We have an active and engaged Involvement Group made up of more than 300 people who either have CF or are parents of someone with CF who are willing to share their knowledge and experiences. We can help to facilitate their involvement in various stages of trial planning, design and delivery.

We can coordinate a range of different involvement activities, including: 

• focus groups and interviews 
• review of relevant exerts of study protocols e.g. study schedules
• review of design and content of patient information sheets and consent forms 
• support in writing lay-friendly trial summaries and result summaries.

We recommend involving people with CF as early as possible in a clinical trial concept or design to get the most benefit, although involvement at any stage can support the progress or reporting of a trial.

We tailor our PPIE support to the specific needs of each sponsor and study, so get in touch to find out how we can help. 

To find out more, contact the CTAP Involvement team.