Community Connect

We are UK wide, independent and we are patient-led. Our Members are patients, relatives and carers, focussed on the use of patient data to save lives and improve outcomes. Our membership maps to the inpatient population of the UK, in terms of health condition, gender, age-profile, location (across the four nations) and ethnicity. We cover all disease/health conditions.

We work with a diverse range of people experiencing disadvantage across West Norfolk. This includes people who are experiencing or at risk of homelessness, those living in poverty or food insecurity, individuals with experience of the criminal justice system, people facing physical and mental health inequalities and families experiencing financial hardship. We also work with people who may have multiple and complex needs, including substance use, housing instability and social isolation. We are interested in research relating to health, wellbeing, housing, homelessness, poverty, community development, access to services, employment, education and the wider factors that influence people’s opportunities and outcomes. We can support both in-person and remote sessions. In-person sessions often work well as they can be incorporated into existing activities and trusted environments within our Health & Wellbeing Centre and community space in South Lynn. Remote can also work, as long as participants can access suitable equipment and support through our centres. Our core hours are Monday to Friday, 9-5 but we can occasionally support sessions outside these times where there is a clear benefit to participants. For example, we may be able to facilitate engagement through community events or family activities that take place at weekends. We would ask researchers to recognise that meaningful engagement with people facing multiple disadvantages often requires flexibility, clear communication and sufficient time to build trust. Opportunities are most successful when they are accessible, inclusive and demonstrate how participants’ contributions will make a difference.

Umbrella network of approximately 120 people affected by cancer and other members of the public who are interested in cancer data and how it is used for research. This includes people who have been involved or are currently involved in Cancer Research UK’s data PPIE work.

Reach supports adults of all ages with learning disabilities in Nottinghamshire. We work across a diverse range of communities across Nottinghamshire, including areas experiencing higher levels of socioeconomic disadvantage, as well as rural communities where people can face different challenges such as isolation, limited transport services and reduced access to services or opportunities.

The Patient Led Research Hub (PLRH) provides academic support to rare disease patient groups, helping them refine their own research ideas, build research teams, and apply for funding. Research ideas are wide ranging, from patient experience surveys through device development and drug repurposing trials.

Sakoon Through Cancer is a charity based in Thames valley whose mission is to improve services and reduce health inequalities for South Asian women facing breast cancer and women’s health issues, making a lasting impact on their emotional, mental, and physical well-being, benefiting women and families from all backgrounds.

Pennine Oaks works with a diverse community, including children and young people, families, women, people from South Asian and other minoritised ethnic communities, refugees and asylum seekers, carers, and people who may experience health inequalities or barriers to accessing traditional services. We are particularly interested in research around health inequalities, mental health and wellbeing, nature and green social prescribing, children and young people, community resilience, inclusion, prevention and early intervention.

The ADR England Public Insights Panel is a diverse group of members of the public who contribute to shaping data-driven research and processes. They are one of the many public engagement initiatives supporting ADR England activities.

The Over 50s Black Men (O5BM) Forum was set up in 2018 to represent the over 300,000 over 50s Black Men living in the UK. The O5BM organisation’s members including the leadership and volunteers are all Black Men, who are over 50 years of age, have the same lived experiences and belong to our same black demographic community we are delivering services to.