The Black Health Legacy study has recruited Thelma Odoi, Newham Councillor (Custom House) for its landmark study aiming to break down generational barriers that hinder the inclusion of Black communities in the UK from health research. Councillor Odoi provided a saliva sample at Queen Mary University of London's Whitechapel campus, one of many research sites across London.
Black Health Legacy is a new landmark study, funded by the Wellcome Trust, launched by Queen Mary researchers, to help prevent, find and treat health diseases that disproportionately affect people from Black backgrounds.
Less than 3% of global genetic data comes from people of African ancestry. This means that genetic studies and the findings or treatments that come from them don't work for everyone. Black Health Legacy aims to change this – by working with Black communities to build trusted, inclusive research and break down deep-rooted social and historical barriers to improve the health of future generations.
The study aims to become the largest research effort of its kind, recruiting thousands of participants with some brief paperwork and simple spit tests taking only 10 minutes. The team have built a robust, secure and trusted study that will operate across the NHS and community settings, led by a majority Black team who are the next generation of researchers, policy makers and health experts.
Councillor Odoi said: "I'm so glad that I participated in this project, and I can only imagine the benefits if the generations before had the opportunity to partake in a project like this."
Black Health Legacy will initially focus on bringing improvements in the prevention, diagnosis and management of type 2 diabetes through research and policy change. Black people in the UK are two to four times more likely to develop type 2 diabetes than white people, and more likely to experience and die from high blood pressure and strokes. Also, people of Black and mixed ethnicity are the youngest groups starting kidney replacement therapy in the UK.
Early findings from the team's collaborative study, in collaboration with colleagues at the University of Exeter, have identified how a common but clinically silent genetic condition called G6PD deficiency is impacting the accuracy of the blood test (HbA1c) used to diagnose and monitor type 2 diabetes in the NHS. 1 in 7 Black men have G6PD deficiency, but most do not know they have it, and it leads to a 4-year delay in diagnosing type 2 diabetes and a faster progression to serious complications such as eye and kidney disease. This highlights the urgent need for more inclusive research and tailored diagnostic tools.
The study will also investigate blood pressure and kidney conditions, which have a significant impact on Black communities. Over time, wider health themes will be addressed, prioritised and shaped by participants and community representatives.
Sarah Finer, Professor of Clinical Diabetes at Queen Mary and Co-lead of Black Health Legacy said: "Our early findings already show how a lack of inclusive research can delay diagnosis and treatment. By filling those gaps, we can improve how conditions like diabetes and hypertension are identified and managed — ultimately saving lives."
Dr Veline 'Esperance, GP, Senior Clinical Research Fellow at Queen Mary and Co-lead of Black Health Legacy said: "We are honoured to have Councillor Thelma Odoi join our study. Her participation sends a powerful message about the importance of representation in research - and how every contribution helps build a healthier future for Black communities across the UK."
At a Community Stakeholder Launch, speakers highlighted the importance of Black inclusion in health data, the ways in which its absence contributes to current health disparities, and why studies like Black Health Legacy are needed to change the norm. The launch brought together over 70 community leaders, advocates, patients, researchers and clinicians.
Dr Nandi Simpson, Director, Implementation NHS Race and Health Observatory was at the event said: "Black Health Legacy is a critically important initiative. The underpinnings of research are data bases and biobanks and bioresources of the type being set up here. And as we've heard today, they are really important not only for identifying genetic determinants of health and disease, but also because they provide us with fundamental information about the way that disease operates that enables us to not only develop screening tools but also diagnostic tools and ultimately treatment".
"The legacy of initiatives like this is critically important because the health data and knowledge we gather today will continue to inform future research and care, benefiting communities for generations," she added.
