NIHR's "Be Part of Research”: Our visit to Sutton’s Afro-Caribbean Cultural Organisation during Black History Month

Our Clinical Research Facility (CRF) met members of Sutton’s Afro-Caribbean Cultural Organisation (SACCO)during Black History Month to raise awareness of health research and clinical trials, with a particular focus on the Improving Black Health Outcomes (IBHO) BioResource and the National Institute for Health and Care Research’s “Be Part of Research” service. The event, which drew an engaged audience and a warm reception, set out the case for inclusive research so that no one is left behind and today’s participation drives generational change.

CRF staff explained that IBHO is building a diverse panel of volunteers so future studies better reflect Black communities, improving everything from diagnosis to treatment safety and effectiveness. Attendees were told that joining typically involves consent, a short questionnaire and a small saliva or blood sample, after which people may be invited to specific studies and can choose whether to take part. The NIHR “Be Part of Research” website was highlighted as a straightforward way to find live studies by condition and location, alongside routes through GPs, hospital teams and community partners.

Questions from the floor centred on practicality and purpose. Participants asked how to get involved, whether all age groups can take part, and what early findings IBHO has reported. The CRF noted that eligibility varies by study: many recruit adults, some include children (for studies our Vaccine Institute carries out) and young people with parental consent, and others focus on older adults; staff offered to help match individuals to suitable opportunities. On IBHO’s progress, the team said the immediate priority is building a large, representative cohort so future analyses are robust; plain-English updates will be shared with participants and community partners as data mature.

Health topics of particular concern included sickle cell. Attendees asked why diagnoses appear to be rising and what the condition involves. Sickle cell is an inherited blood disorder in which red cells can become rigid and “sickle” in shape, leading to anaemia, pain crises and complications. Increased awareness, screening and demographic change may be contributing to higher recorded numbers, underscoring the need for continued research into prevention, pain management and emergency care pathways. There was also discussion about whether doctors fully understand how medicines and treatments affect Black people; we emphasised that stronger representation in research is the surest way to generate the evidence clinicians need to tailor care.

Trust and accountability were recurring themes. One attendee who survived prostate cancer described taking part in a previous trial 15 years ago but receiving no feedback on outcomes. We explained that research has moved on and that feedback is shared with participants throughout the trial period and that we close the feedback loop. We also explained that our CRF is committed to clearer expectations at consent, routine lay summaries of results where possible, and accessible channels for participants to receive updates. The facility also pledged ongoing collaboration with the group, co-designing plain-English materials, scheduling follow-up Q&As and offering convenient sign-up opportunities.

The evening closed with practical next steps. Residents were encouraged to register interest in IBHO, search NIHR’s “Be Part of Research” for opportunities, speak to their GP or hospital team about studies, and stay connected via SACO for local events and sign-ups. We underlined that research is for everyone—people with and without current diagnoses—and that inclusive participation today will shape fairer services and better long-term outcomes for families across generations.