Patients discuss importance of diversity in research participation

UCLH has produced a short video to support members of Black communities who may be considering taking part in health research.

The new video focuses on people of different backgrounds in Black communities sharing their experiences of joining a special theme within the National Institute for Health and Care Research (NIHR) BioResource called Improving Black Health Outcomes (IBHO).

Participants speak about why they chose to get involved, the importance of representation in health research, and how participation has been a valuable experience for them.

NIHR BioResource is a panel of more than 340,000 volunteers across the UK, some with health conditions and some without, who wish to participate in health research. The IBHO BioResource, led by NIHR BioResource in collaboration with Genomics England, is dedicated to improving knowledge and understanding of health conditions and their unique impacts on Black communities. These conditions include mental health, sickle cell, diabetes, cardiovascular disease, and kidney disease.

Since launching in 2024, more than 4000 volunteers have consented to join IBHO. UCLH has enrolled 700 participants, with staff members making up half of these. More than 200 UCLH participants with sickle cell disorder and 76 participants with thalassaemia have taken part.

UCLH consultant haematologist and study principal investigator Sara Trompeter said: “At UCLH we are aware of the challenges in conversations that arise from a project that is aiming to address healthcare inequalities. The team have an open and honest dialogue with patients, staff and the community alike.

“We have worked with several clinical teams including haematology, maternity, paediatrics, apheresis and prostate teams. We have invited nursing staff at our cancer centre to be advocates and sharing the project with colleagues and patients and this is the result.”

The video, entitled ‘UCLH Testimonials: IBHO BioResource and sickle cell’ supports the wider goal of building equity and inclusion in research, empowering Black voices and helping to strengthen trust between patients, healthcare providers and researchers.

If you want to know more about NIHR Bioresource @UCLH you can read more here. The pages include contact details for the team and the ability to fill in an expression of interest form.