We are committed to involving patients, service users, family members and other members of the public and communities in our health and social care research studies to support evidence-based improvements.
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, family members and people who use health and social care services, as well as people from community or voluntary groups. A ‘public contributor’ is a member of the public who gets involved in how research is designed and run.
We use the National Institute for Health Research (NIHR) definition of 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:
But public involvement is different from:
The NIHR launched a new Centre for Engagement and Dissemination in April 2020 that brings together its activities in public involvement, engagement and participation with its strengths in dissemination.
ARC 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 out how your experiences can help shape our research. We offer payment for your time 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), Rosemary3.Davies@uwe.ac.uk, or Mike Bell, Public Involvement Facilitator, email@example.com. Opportunities to get involved are also advertised in a newsletter called Newsflash.
Public contributors work with us in a variety of ways.
Public contributors work with our staff team and focus on the overall work of ARC West, helping to review and develop our activities. The Strategy Group is co-chaired by a public contributor and the Deputy Director of ARC West. ARC West has developed a Public and Community Involvement, Engagement and Participation (PCIEP) strategy (PDF) published in March 2021. The strategy describes our aims and objectives from 2019-2024.
ARC West’s research focuses on four research themes: healthier childhoods, integrated and optimal care, mental health, and public health and prevention. Each theme has a Research Oversight Group (ROG), whose public contributor and stakeholder members have worked with ARC West staff to identify topics and priorities for the health and care systems and communities in the West in 2019-20. Each ROG has at least two public contributor members, alongside a member of the Public and Community Involvement, Engagement and Participation team, who have been fully involved in identifying and agreeing top line priority topics in 2020. Find out more about the priorities identified.
We also have three groups 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. The third is the Young People’s Advisory Group, a group of children and young people with experience of offering advice and guidance on research into or about issues relevant to young people.
We have public involvement groups to support some projects and areas of research. 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.
As well as working with individual public contributors in a variety of ways, ARC West also develops research projects in collaboration with community organisations. For example, they have included the Knowle West Media Centre for the How Do You Move? and Create to Collaborate projects, and Bristol Drugs Project for the Low versus high dead space syringes: user preferences and attitudes project.
Our public involvement team works with a regional network called People in Health West of England (PHWE). Its aim is to promote a strong public voice within health and social care research and help to improve the services provided by the NHS and social care.
People in Health West of England has seven partner organisations in the region, including ARC West, the NIHR Bristol Biomedical Research Centre, the West of England Academic Health Science Network, the NIHR Clinical Research Network: West of England, the NIHR Blood and Transplant Research Unit, the NIHR Health Protection Research Unit in Behavioural Science and Evaluation and Bristol Health Partners. These partners work with NHS trusts, local authorities and other service providers, integrated care systems, 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). Work is conducted through two groups, a Steering Group which decides the network’s overall aims and what resources and capacity are available, and an Operational Group which develops and monitors the work plan. There are public contributors on both groups. 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 ARC West, People in Health West of England’s key activities are:
More information and guidance about public involvement is available from: