The importance of Public and Patient Involvement throughout the research process and its impact on funding decisions
Presented by Anne Marie O’Dowd, Director, Cystinosis Ireland and Chair of Cystinosis Network Europe (CNE) and of the Worldwide Cystinosis Community Advisory Board (CAB)
Public and Patient Involvement (PPI) is becoming an integral part of scientific research. Clinicians have experience of patients engaging in their own clinical care but involving the person with the disease in the research project can be new territory for researchers. Those who already do so report an improvement in quality and relevance in their research. However, there can be misunderstandings about what PPI is and how it should be used. With funding bodies now requiring PPI to be part of the application as well as scoring PPI in funding decisions, PPI can no longer be ignored by researchers. This talk describes what PPI is and what it is not as well as providing information on how researchers can imbed PPI into their project applications and ongoing studies.