In this blog, ARC East of England PPI lead Bryony Porter highlights the importance of involving people in health and social care research. She shares how we created an online resource with impactful examples of successful community engagement across the East of England. This provides guidance on effective approaches for engaging different communities to ensure meaningful involvement in research.
Bryony Porter, Public and Community Involvement, Engagement and Participation (PCIEP) Lead
At ARC East of England (ARC EoE), we have a responsibility to ensure that the research we do is responding to the needs of people and communities in our region. We need to ensure that our research findings can make a positive change and improve health and social care services. Involving people in health and social care research can help us to improve and increase the diversity of views and experiences that guide what we do.
The Shared Commitment to Public Involvement in Health and Social Care Research brings together the Health Research Authority, National Institute for Health and Care Research and at least 27 research active organisations from across the UK. Each organisation has agreed to embed best practice for involving patients and the public to ensure that research is inclusive, diverse and values all contributions. ARC EoE already models the UK standards for patient and public involvement across our research themes.
We have joined the Shared Commitment to learn from others and also share our learning, experiences and resources. The group meets online throughout the year, including public and patient contributors from each organisation to learn and discuss opportunities to improve.
This year (2025), we are celebrating the third anniversary of the Shared Commitment, and we have two new public contributors at ARC EoE who have joined the Shared Commitment group. We’re grateful to Amander Wellings and Mary Ledgard for sharing their expertise and insights from years of experience in public involvement in research, and we can already see the great contribution they are making to this national group.
"Collaborative approaches to working with patients and the public to shape our research have been applied in ways that are appropriate and meaningful to the communities benefitting from our research projects. It’s important to be flexible in the approach used and tailor this to the group or community you are working with."
Bryony Porter, Public and Community Involvement, Engagement and Participation (PCIEP) Lead
Community involvement early in the planning stages of projects was always helpful, and can ensure that data collection and interventions will be successful in those communities. Examples of the difference public involvement makes in our research can be found in our impact case studies here:
Involvement approaches helped to identify the cultural factors that were important to guide how best to communicate with and involve Muslim communities in the British Islamic Medical Association (BIMA) bowel cancer screening intervention evaluation. Imams in participating mosques promoted the intervention and follow-up sessions after prayer times and put up posters advertising them to increase bowel cancer screening. Health professionals and GPs from within the community shaped the health messages so they were relevant to their members.
The Developing resources And minimum data set for Care Homes' Adoption (DACHA) study worked with Activity Providers in care homes to facilitate discussions about this research project. An unexpected outcome was that involving residents created a space where they could express their thoughts around their own care to the Activity Providers facilitating the sessions. Discussions exploring aspects of the DACHA study sparked conversations to get to know the residents better and they felt this process was empowering. Activity Providers were keen to respond to residents’ feedback and wishes to make meaningful changes in practice, such as involving residents in reviewing their care plans with staff.
Through public involvement, the research team uncovered issues that were very important to residents and relatives. The Public Involvement Panel selected the care-related quality of life outcome measures to be tested in the study.
"What I’ve been amazed at is how much you can learn from taking part in these panels, so I feel I’ve learned a lot… it’s been fantastic, I’ve enjoyed every meeting."
Relative, DACHA project
"Our views have been valued…having the chance to connect with a group of people that come at it from such different perspectives that care very deeply about the subject matter has been a real boost in morale. It’s been really valuable and definitely informed my work as a carer and made my care better, so thank you."
Care home practitioner, DACHA project
The co-production approach in The Lost Mothers Project was a way to create more understanding, and equality in this research exploring the experiences of women who undergo mandatory separation from their new-born babies in prison. The lived experience team had an active role in shaping the research and making decisions, ensuring the viewpoints of people who have personally been through the prison system were always included.
“All of my input feels valuable and not just for the project itself, but for my own personal well-being. It has been amazing so far. You often feel like after you’ve done something that you are capable of anything. It puts a battery in your back and makes you feel more powerful, I feel more purposeful.”
Suzy, Lived Experience Team member, Lost Mothers project
We have presented ARC EoE projects at regional and national patient and public involvement meetings and at conferences, sharing a variety of approaches to actively involve older people’s voices at the British Society of Gerontology 2023 and the Public Involvement in Research Showcase 2024. Our Inclusive Involvement in Research theme holds regular Community of Practice events to share and discuss best practice and learning with public contributors, service users, researchers and students.
For more information on how to involve people and find the best approach, check out these pages on our website:
- Impact of public involvement in our research | ARC East of England
- Public involvement resources | ARC East of England
Contact me at Bryony.Porter@cpft.nhs.uk to discuss these resources further or seek advice on embedding best practice for public involvement in your research project.
