What is PPIE
Patients and the public are at the heart of everything we do in the Keele Patient and Public Involvement and Engagement group. We want to give people a chance to have a say in their own care and treatment and how much they want to be involved in the decisions. By getting involved you can give us a better chance of understanding priorities and concerns, and by working together we can develop guidance and assist others from these recommendations.
Listening to the patient voice
Research carried out at Keele is focussed on improving the health and well-being of anyone affected by a physical or mental health condition. We think it is vital that we listen to the very people who live through these conditions on a daily basis in order to produce the very best research evidence possible. All our patients, carers, relatives and members of the public who have experience of conditions are very welcome to join our rapidly expanding advisory group - the Research User Group (RUG).
Expertise by experience
Established in 2006, the Research User Group now includes over 80 members of the public from all over the West Midlands. The only knowledge needed to join the RUG is experience of living with a condition. Researchers want to hear the opinions, thoughts and advice of patients and families for their projects. RUG members know so much more about how a health problem can impact their lives and can therefore help to make sure that research carried out at Keele stays relevant to patients.
What do RUG members do?
We currently have around 70 different physical and mental health research projects which RUG members are involved in. Members of the RUG all either have direct experience of living with a long term condition or they are carers or close relatives of someone else who does.
Activities RUG members are involved in include:
- Giving advice on research design
- Reading and giving feedback on research materials (e.g. questionnaires, letters to patients, consent forms)
- Commenting on research proposals
- Being members of project steering committees
- Being co-applicants on grant submissions
- More examples of the activities
Simon Denegri | NIHR National Director for Public Participation and Engagement in Research
There is a very simple idea behind public involvement which is that their insight and experience is extraordinary, helping to improve the quality, relevence and effectiveness of their research.
Derek C. Stewart | Associate Director NIHR Clinical Research Network
We all need to work together, the public, researchers and the NHS to ensure that we talk about research. We must find better ways of informing people about research that is appropriate and relevant to them.
Professor Elaine Hay | Associate Dean for Research, Faculty of Medicine and Health Sciences, Director of the Research Institute for Primary Care and Health Sciences
As researchers, I think that we sometimes lose sight of the fact that the reason we do research is for the benefit of the patients, and patient and public involvement brings us back to that.