Learn about our collaborative approach working with the public to shape our research and ensure its meaningful impact on our local communities.
We involve people at every stage of the research journey, from identifying research priorities to sharing findings. Public contributors are members of ARC East of England groups and committees, including the Research Inclusion Forum, and work alongside researchers across our programmes. We recognise people's contributions by reimbursing their time and expenses.
The case studies below showcase how public involvement has shaped our research and the impact it has made for projects, researchers and communities. Click the drop-downs to find out more.
Increasing bowel cancer screening in Muslim communities
Bowel cancer screening uptake is around 28% lower in people of South Asian ethnicity compared to the general population. Lower rates of screening uptake have also been reported overall among the UK Muslim population. Unequal access to screening can lead to avoidable health inequalities and health outcomes. ARC East of England evaluated a British Islamic Medical Association (BIMA) “faith placed” educational intervention delivered in mosques in Luton and Peterborough.
Public contributors, community partners, mosque leaders and volunteers helped shape and deliver the project. Their involvement informed how the research team engaged with community gatekeepers, framed discussions about the intervention, and tailored data collection activities to community needs.
Public involvement provided invaluable insight and guidance into how best to communicate with communities and played a key role in the successful delivery of the study.
Involving care homes, residents and relatives in research
The DACHA study aimed to develop a Minimum Data Set for care homes to improve how information about residents is collected, shared and used.
Residents, relatives, care home staff and national stakeholders were involved throughout the project. During the COVID-19 pandemic, the team worked with the National Activity Providers’ Association (NAPA) to engage residents in meaningful discussions about research. Regular consultations also informed study design, recruitment plans and the selection of outcome measures.
Public involvement highlighted issues that were important to residents and relatives but had not been considered by the research team. It also empowered residents to share their views about their care, leading to practical changes within some care homes.
Public contributors were central to shaping the study and ensuring that the research reflected the priorities and experiences of residents, relatives and care providers. The Public Involvement Panel were crucial in selecting care-related quality of life outcome measures to be tested in the study.
Involving carers and patients to design and try out a Carer Support Nurse Role
Unpaid carers play a vital role in supporting family members and friends, but often receive limited support for their own wellbeing and caring responsibilities. To address this, ARC East of England worked with carers, patients, health and social care professionals, voluntary organisations and commissioners to develop a new Carer Support Nurse role.
More than 100 carers and patients, alongside stakeholders from across the East of England, contributed to the design and evaluation of the role. Public contributors helped shape recruitment materials, data collection tools, study processes and interpretation of findings.
Their involvement ensured that the role reflected the real needs of carers and strengthened the quality and relevance of the evaluation.
Public contributors identified important questions and perspectives that the research team may not otherwise have considered, helping to inform the project's final recommendations.
Involving people who are less socially connected in research
Social connection plays an important role in mental and physical wellbeing, but people who are less socially connected can be harder to reach and support. ARC East of England researchers explored what social connection means to people aged over 50 through group discussions with community members across the East of England.
Community organisations, public contributors and local groups helped shape the study and supported engagement with people experiencing loneliness or poor social connection. Their involvement informed the research approach, particularly around discussing the sensitive and emotive topic of loneliness.
Public involvement helped researchers better understand and communicate about loneliness, while community partners played a crucial role in reaching people who were less socially connected and informing local funding and decision-making insights.
Involving mothers with criminal justice system experience in research
The Lost Mothers Project explores the experiences and care needs of women who are separated from their new-born babies while in prison. It is the first study to bring together the perspectives of women with lived experience, alongside professionals from social work, health visiting, midwifery and criminal justice services.
Women with lived experience of the criminal justice system were involved throughout the project as co-creators and decision-makers, working in partnership with the charity Birth Companions. Their contributions shaped all aspects of the study, including the research design, interview schedules, data analysis, publications and creative outputs.
Lived experience involvement was central to the project, ensuring that the research reflected the realities of women affected by maternal separation in prison and demonstrating the value of co-production in creating meaningful and impactful research.
Involving people with lived experience of using mental health services
Person-centred care aims to ensure healthcare is shaped around patients' individual needs and priorities. ARC East of England researchers worked with mental health service users and healthcare professionals to adapt the Support Needs Approach for Patients (SNAP), a tool designed to help patients identify and discuss the support they need.
Mental health service users were involved throughout the project, taking part in focus groups, workshops and surveys to adapt and validate the SNAP tool for use in mental health settings. Their insights helped ensure the questions and approach were relevant, practical and meaningful for people using mental health services.
Public involvement was central to adapting SNAP for mental health care, ensuring the tool reflected the priorities, experiences and support needs of people with lived experience of mental health services.
Involving people with impaired capacity nearing the end of life in research
People with impaired capacity are often underrepresented in research, particularly near the end of life, despite the importance of ensuring care and treatment are based on inclusive evidence. This project explored how to improve opportunities for people with impaired capacity to take part in research and help shape future studies.
Working with the Anne Robson Trust, people affected by dying and bereavement, care home staff, volunteers and researchers contributed to discussions, workshops and surveys. Their insights helped identify key values such as respect, trust, equality and representation, and informed approaches to making research more inclusive and accessible.
Public involvement played a vital role in identifying barriers to participation and shaping practical recommendations, resources and engagement materials to support more inclusive end-of-life research.
Involving people with multiple long-term conditions
Many people live with two or more long-term health conditions and often experience fragmented care across different services. This project explored the challenges faced by people with multiple long-term conditions and identified ways to improve care coordination and support.
People with lived experience of multiple long-term conditions were involved throughout the study, from developing the research idea to shaping study materials and participating in workshops. Their experiences helped identify key challenges in managing multiple conditions and informed recommendations for future research and service improvement.
Public involvement provided valuable insight into the everyday experiences of people with multiple long-term conditions, highlighting the need for more integrated, person-centred care, better communication between services, and greater support for patients and carers.
Involving young people and school staff to co-design training for self-harm disclosures
Self-harm among young people is a growing public health concern, and school staff often feel underprepared to respond when students disclose self-harm. The SORTS study worked with young people and school staff to co-design a free training resource to improve staff confidence and support for students.
Young people with lived experience of self-harm, school staff and mental health professionals were involved throughout the project. They helped shape the research, develop study materials, create training content and review resources, ensuring the final outputs reflected real experiences and needs.
Co-production and public involvement were central to the project, resulting in a practical, evidence-based e-learning module and resource toolkit that supports school staff to respond appropriately and confidently to self-harm disclosures.
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Involving care home residents with care home activity providers
Care home residents are often underrepresented in research, despite their valuable experiences and insights. The CHAPPI project explored how care home activity providers can support residents to become involved in research and help shape studies that affect their lives.
Care home residents, activity providers, family members and public contributors were involved throughout the project through advisory groups and consultations. Their input helped explore how public involvement can be integrated into care home activities and support residents to have their voices heard.
Public involvement demonstrated how research participation can be a meaningful activity for care home residents, helping care homes foster a culture of listening, responsiveness and involvement in knowledge development.
Involving carers in shaping dementia research
Frontotemporal dementia (FTD) is a major cause of young-onset dementia and can have a significant impact on carers' wellbeing. The FTDToolkit project is developing and evaluating online resources to help carers monitor symptoms, manage the condition, and access support.
Carers were involved in shaping the study through consultations that reviewed questionnaires, interview guides and study materials. Their feedback helped improve the clarity, accessibility and relevance of the research by ensuring it reflected real-life experiences of caring for someone with FTD.
Public involvement helped make the research more accessible and meaningful for carers, demonstrating how lived experience can improve the design and delivery of dementia research.
Involving young people in shaping mental health research
Young people are often excluded from decisions about mental health research and services, despite being directly affected by them. This project worked with young people to identify mental health research priorities and explore how research findings can be shared in ways that are accessible and meaningful.
Twenty-six young people aged 13 to 22 took part in discussion groups to share their views on the issues that matter most to them. Their contributions identified key priority areas, including family life, social media, peer pressure and cultural influences, as well as the need to clearly distinguish between wellbeing and mental health conditions.
Public involvement ensured that young people's voices shaped future mental health research priorities and highlighted the importance of communicating research findings through a range of accessible formats, including written summaries, infographics, videos and podcasts.
Involving Mid-Older LGBT+ people in shaping inclusive research and policy
Mid-older LGBT+ people can experience exclusion due to age, sexual orientation and gender identity, often compounded by other factors such as disability, ethnicity or location. The IncludeAge project worked with LGBT+ people aged 40+ to explore experiences of place, belonging and inclusion.
People with lived experience were involved throughout the project as co-researchers, helping to conduct interviews, analyse findings and design project outputs. Community advisory groups and partner organisations also contributed to ensuring the research reflected a diverse range of experiences and perspectives.
Public involvement was central to the project, helping to shape inclusive research, training resources and policy recommendations that were grounded in the lived experiences of mid-older LGBT+ people.
From shaping research questions and study design to interpreting findings and sharing results, public contributors play a vital role in our work. These case studies show how meaningful involvement leads to more inclusive research and better outcomes for patients, services and communities.
