What is public involvement?
Public involvement is about members of the public working in active partnerships with researchers and research organisations. It’s also known as patient and public involvement, or PPI.
The term ‘public’ includes patients, potential patients, carers and people who use health and social care services, as well as people from organisations, such as community groups, that represent people who use services. A ‘public contributor’ is a member of the public who gets involved in how the research is designed and run.
We use NIHR INVOLVE’s definition of public involvement. NIHR INVOLVE is the national advisory group on public involvement:
“Public involvement in research is research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.”
Involvement can include:
- identifying research topics and questions of importance to patients and service users
- offering advice and feedback as a member of a project’s steering group or a public involvement group
- commenting on and helping to develop research materials such as information sheets for patients, interview guides or questionnaires.
- conducting interviews with research participants
- helping to share research findings and get research evidence into practice
But public involvement is different from:
- Engagement – where information and knowledge about research is shared
- Participation – where people take part in a research study as participants, or subjects
How to get involved
CLAHRC West conducts health and social care research projects and helps to get research evidence into practice. We need members of the public to help guide the research we do.
To get involved you don’t need any medical experience or specialist knowledge. You do need an interest in health and social care research, some time to spare and a willingness to share your thoughts and ideas with us. We want to work with you to find how your experiences can help shape our research. We offer payment for your time, agreed in advance, and cover reasonable expenses.
Sometimes we need patients, service users or carers with relevant experience for a research study. This might include people with a particular health problem, who have had particular treatments or used specific services, or are from a particular social group.
To find out more, get in touch with Rosie Davies, Research Fellow (PPI), on 0117 328 8469 or email: Rosemary3.Davies@uwe.ac.uk. Opportunities to get involved are also advertised in a newsletter called Newsflash.
Public involvement in the west of England
We have a public involvement team and regional public involvement network called People in Health West of England. The team works across five health networks in the region, including CLAHRC West, the NIHR Bristol Biomedical Research Centre, the West of England Academic Health Science Network, the NIHR Clinical Research Network: West of England and Bristol Health Partners. These partners work with NHS trusts, local authorities and other service providers, clinical commissioning groups, universities, Healthwatch and the NIHR Research Design Service South West.
People in Health West of England is hosted by the University of the West of England (UWE Bristol) and has six staff. It is supported by an operational group which has ten public contributor members, alongside public involvement staff members. People in Health West of England links to, and builds on, existing patient and public involvement activities already taking place in research, service delivery and commissioning in the region.
This joined up approach to public involvement creates the opportunity for integrated and strategic involvement, where the public can have a strong voice in health research and care, helping to improve the health of people in the west.
Alongside work to support public involvement in CLAHRC West, People in Health West of England provides shared resources for involvement including:
- working to improve inclusion and increase the diversity of those involved
- providing learning and development opportunities
- supporting the evaluation of involvement activities
- supporting broader public engagement
More information and guidance about public involvement is available from:
Public involvement in CLAHRC West
Public contributors work with CLAHRC West in a variety of ways.
Two public contributors work with our staff team and focus on the overall work of CLAHRC West, helping to review and develop our activities. We also have two panels of public contributors. One helps us to ensure that research findings are written in plain English, the second provides input on projects that focus on health systems.
We have public involvement groups to support some areas of research, for example in fibromyalgia, chronic pain and incontinence. Other projects have public contributors working alongside researchers in different ways.
Some of our projects have been initiated by public or community members. For example, one project on autism in the Somali community was initiated and co-produced at all stages with Nura Aabe, a Somali mother of a child with autism who identified the need for research. Research on post-operative urinary retention was initiated by a patient, Nick Leggett, who continues to work with us as co-lead.