What is public involvement in research?
The NIHR INVOLVE defines patient and public involvement in research as research being carried out 'with' or 'by' members of the public rather than 'to', 'about' or 'for' them. This includes, for example, participating in study steering groups and offering advice to researchers, supporting researchers to develop study materials, providing feedback and interviewing participants.
The term 'public' refers to patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services. Their role is distinct to that of professionals in health and social care services.
Exemplars of public involvement in our study are family carers and persons with intellectual disabilities.
Family carer group
The Challenging Behaviour Foundation has supported us to recruit family carer representatives that have been involved in our research study, providing valuable input and advice on study related issues and topics. Their contribution through regular meetings is highly valuable and we look forward to continue working together for the duration of the study.