Public involvement in research is research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.
Public Involvement
Public involvement is where members of the public are actively involved as partners in research projects and in research organisations. This includes the involvement of patients, carers and people who use health and social care services (now or in the past), as well as people from organisations, such as community groups, that represent people who use services.
Examples of how the public can help shape research are:
- identifying 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
- helping to develop information leaflets for people taking part in research that are easy to read and understandable
- supporting the researchers with carrying out the research, for example by interviewing people taking part
- helping to share the results of research in accessible ways that are easy to understand
How ARC EoE is involving the public
We have public contributor roles in groups and committees that oversee the planning and organisation of ARC EoE. This includes the Public, Community, Involvement, Engagement and Participation Group (PCIEP Group) who over see our approach to public involvement across the ARC. The Public Involvement Hub work with our early career researcher ARC EoE Fellows to build experience in public and patient involvement. Our researchers involve the public in the research they carry out. This includes in the ways outlined above. Public contributors are offered reimbursement for their time and expenses covered.
Our researchers are also working to engage with people who live in different communities across the East of England, including Peterborough and Fenland, Great Yarmouth and Waveney, Stevenage and Thurrock, so we can understand better what the needs of these communities are and work to make sure our research makes a positive difference to the lives of the people who live there.
Learn the latest about our work with communities across East of England here
ARC EoE Public Involvement Hub
Established in April 2024, The Hub works with ARC EoE early career researchers on the Fellowship Programme to build experience and highlight the importance of patient and public involvement across the research cycle. The Hub members are a diverse group with different backgrounds, lived, personal and professional experiences. The Hub has helped researchers to be more considerate of the patient and public benefit of their projects, improve research material clarity, inclusivity and cultural sensitivity, helped researchers to rethink clinical or professional assumptions and approach their research with greater openness to lived experience. Many of the visiting researchers have also noted feeling more confident and better informed after the attending The Hub.
While the clinician in me has clear views on what needs to be implemented in the intervention, it is obvious that this voice only sees the clinical aspect. Having heard the views of each member of the panel I am now aware of things I haven't considered before, things that are likely to make my implementation project more meaningful for patients and staff.
ARC EoE Fellow who visited The Hub in 2024