What is Patient and Public Involvement (PPI)?

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.

How will the PPI be organised for CareCoach?

The CareCoach programme is establishing a Service User Advisory Group (SUAG) to involve patients and members of the public in the research.

Who is our PPI Lead?

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.

What is a SUAG?

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. 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.

What would be my role in the SUAG?

As a member of the SUAG, you may be involved in attending an online meeting with other members every 3 months. In these meetings we may ask for opinions, ideas and recommendations from the group about our research. You may also be asked to read and comment on research information leaflets or other research materials to make sure they are clear and accessible for carers who take part in our research. You may also help promote or communicate the research within your community, groups, and people you know who care for someone with dementia. This helps us reach more carers who might want to take part in our research.

The amount of time you give to being part of the SUAG is up to you and can be flexible around your commitments. No previous research experience is necessary and you will be reimbursed for your time.

Watch the video to hear Geoff’s views on the CareCoach programme and his involvement in the research by clicking here

Here are some thoughts from our CareCoach SUAG members

Derek Brown

Having cared for my wife Margaret who has had Alzheimer’s Disease for 5 years I have learnt the hard way that straight forward simple advice is essential when dealing with the challenges of caring for your loved one 24/7. Time is something you don’t have much of.

Joanne Jennings

I became a full time carer for my dad and didn’t really know where to go for support.  I hope, that working with this group, it helps other carers in the future.

How can I get more information or get involved?

If you would like more information, we’d love to hear from you. Please email carecoach@uea.ac.uk or call Helen Morse (Trial manager) on 07599 926354

The National Institute of Health Research (who funds the CareCoach research programme) has some helpful information about the ways to get involved in research and how you could help change people’s lives. Read more here