What is Public Involvement in Research?
Public involvement in research commonly known as 'Public and patient involvement' or 'PPI' is described as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. PPI is different from participation in a research study. It involves being part of the process of discussion, providing comment and feeding back views and opinions for researchers to incorporate into their work.
The Ignition study wants to involve the public, who are not researchers, in our research. In keeping with this aim, we are working to embed PPI in this research study by including the voices of young people with cerebral palsy, their families and health care professionals.
If you are interested in finding out more about PPI in research and the Ignition study you can watch our video or scroll down for further information.
Why is PPI important?
PPI is an important step in ensuring that the real-life experiences of people with cerebral palsy are considered when decisions are being made about what research to do, what are the most important questions to be answered, and how to design studies that people are more likely to both take part in and also to stay involved in until the end.
What would I have to do?
IThere are many different ways in which you can help researchers. For example:
To support the development of documents for the project such as advertisements and information sheets
To advise on the methods used to recruit participants
To advise on the methods used to collect data such as the content of surveys
To pilot methods of data collection such as surveys or interviews
To discuss and comment on the findings of the research
To develop resources to support young people with CP to transition from child to adult health services
To advise on, design and develop leaflets and other materials outlining the findings of the research for young people, families and health professionals
Study Steering Group
Our study steering group works with the researchers and health professionals on the Ignition study to plan, design and manage the project and to evaluate and share the research findings. The study steering group is made up of young people with cerebral palsy, family members of people with cerebral palsy and health care professionals.
We are looking for young people with cerebral palsy, their families and carers and service providers who are interested in joining our study steering group.
If you would like to get involved please contact a member of our research team by clicking the below button.
We will keep a list of people who are interested and contact you when opportunities for getting involved arise.