What is PPIE?
Patient and Public Involvement and Engagement (PPIE) is a way for patients and the public to inform and shape the design and conduct of research. It is a very important part of research as this shows research is being done with people, not being done on people. This ethos is about working together and sharing decision-making.
While PPIE is increasingly embedded in research, this process can happen at any part of a research cycle. From identifying a research question, to influencing policy, study design, and disseminating results, PPIE can be broken down to “participation”, “engagement”, and “involvement”. This image shows the differences between how people can contribute to research: Participation relates to participating in a study, and engagement highlights how people may support recruitment or dissemination of research; however, involvement incorporates both of these aspects for a more rounded approach.
PPIE brings a lived experience perspective to research. For chILD, this is essential as many aspects of care and support may be required than traditional research studies. Before designing an expensive study, it is best for researchers and clinicians to understand the needs of chILD patients and their parents/carers to ensure the study’s success.
There are different methods of PPIE and these may vary depending on the research project. Your contribution can help in numerous ways:
Research Relevance
Novel Perspectives
New Ideas
Improved Communication
Motivation and Focus
Greater Impact
Due to chILD being rare, our focus at ChILD UK is to build a Patient Network of children, young people and their parents/carers to support clinical research. This is so we all can contribute to and take chILD research forward. Here are some examples of PPIE we can contribute to:
- LifeArc Rare Disease Centre, University of Edinburgh
- ChILD EU – Task Force Research
Sign up today!