Public involvement in research is about establishing active partnerships between patients, the public and researchers. Involvement in research means considering what research is to be done, how it will be done, how patients will be recruited and how the results may be used.
The NIHR Centre For Engagement and Dissemination is a national advisory group that supports active public involvement in clinical research funded by the National Institute of Health Research (NIHR). The Centre leads NIHR’s work to make health and care research representative, relevant and ready for use. The NIHR defines Patient and Public Involvement as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes working together to identify research priorities and design, implement, manage, evaluate and share research. It is not taking part in a clinical trial as a participant.
The CareCoach programme is establishing a Service User Advisory Group (SUAG) to involve patients and members of the public in the research.
Public involvement in research is about establishing active partnerships between patients, the public and researchers. Involvement in research means considering what research is to be done, how it will be done, how patients will be recruited and how the results may be used.
The NIHR Centre For Engagement and Dissemination is a national advisory group that supports active public involvement in clinical research funded by the National Institute of Health Research (NIHR). The Centre leads NIHR’s work to make health and care research representative, relevant and ready for use. The NIHR defines Patient and Public Involvement as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes working together to identify research priorities and design, implement, manage, evaluate and share research. It is not taking part in a clinical trial as a participant.
The PPI Lead on the CareCoach programme is Geoff Fenwick. Geoff has lived experience of caring responsibilities for a family member living with dementia. Geoff is a PPI Co-applicant on the CareCoach programme and supports experience-based co-design during WP1 and WP2, and has an advisory role in recruitment, analysis and dissemination. Watch the video below to hear Geoff’s views on the CareCoach programme and his involvement in the research.
A SUAG is a Service User Advisory Group and is one of the ways patients and members of the public can get involved in clinical trials/programmes.
The CareCoach SUAG will consist of 6 carers of people with dementia and 4 people with dementia.
SUAG members have a key role as expert advisors to the research team, providing their lived experience and insights to ensure the CareCoach programme is addressing key issues and concerns which will be relevant to people living with dementia, their family carers and professionals who support these groups.
