Clinical trials are facing a diversity problem: ethnic minorities are hugely underrepresented. This under-representation not only perpetuates poorer health outcomes within these groups but also contributes to further social inequalities. For example, an individual from a Black minority group diagnosed with melanoma (a type of skin cancer) is 2 to 3 times more likely to die from the disease than a non-Hispanic white counterpart (reference). Knowing that these inequalities exist, and that differences in response to medical products have been observed in different ethnic groups (reference), appropriate representation of all members of the population in research is essential to break this cycle.
However, as more and more theoretical resources on the diversity problem are becoming available, the reality is that we are not observing the impact that needs to be made. At Lindus Health we are directly involved in recruitment of patients and participants for clinical research, and while we have made strides to improve diversity in our trials, this is an ongoing challenge and we’re very aware there’s not much real data on this topic! After gathering feedback from experts from our Participant Advisory Board, we have developed a plan in combination with Professor Duncan Richards from University of Oxford to deliver on diversity and actually generate the evidence to figure out what works!
Our very first step is understanding. We want to be fully aware of what the problem is and how it is affecting researchers and participants at all stages of research. We’re deliberately putting some extra focus on early stage research because of the lack of data in this area. We are doing this through a systematic review (an extensive summary on all the literature available) on diversity in research, along with large scale focus groups and surveys involving practitioners and members of the public, including patient representation groups. This understanding will help us generate hypotheses for Stage 2…
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Once we have our hypotheses we need to test them! With the understanding of the barriers and the current challenges that clinical research is facing on diversity, we want to put these to the test in the trials that we are running, a “trial within a trial”. We want to ensure we come up with plausible and effective strategies that we can implement to ensure that clinical research and its outcomes are accessible to everyone, everywhere.
As the project advances, we will be thrilled to share our progress with the scientific community and others involved, so make sure you keep in touch if you want to hear more about this!
Pilar Artiach Hortelano, Lindus Health Project Lead and Research Assistant at the University of Oxford
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