This blog was written by Deepali Patel. Deepali started her career working as a research scientist at the Cancer Research UK labs in Cambridge. She has research & clinical trials experience and is a trial manager at the Cancer Prevention Trials Unit.
My dad came home one day after a hospital appointment slightly disgruntled that a research team member had approached him about taking part in research, only to then state that my dad would not be suitable for the research as he may not understand the complexities of the study. I wondered what gave the research team that impression?
My dad can solve and work with complex scientific theories and equations as he is a Physicist. He also has a proud African accent and still encounters unconscious bias even with the most well-intending individuals.
The picture in 2021
Over the years there has been an increased awareness in the research community about underrepresented groups in research and clinical trials that range from age, gender and sexual orientation, to socio-economic status, religion, literacy, culture and location. The picture hasn’t changed much in 2021, due in part to a long history of lack of trust in research and clinical trials, poor engagement and low prior participation in research.
From a historical perspective, low participation of ethnic minority communities has been attributed to research like the Tuskegee syphilis study is widely recognized as one of the reasons for mistrust as is the unethical use of Henrietta Lacks cells in clinical research without appropriate consent.
The COVID-19 pandemic has created a segue for clinical trials to be in the public eye. Public and patients now have more awareness of clinical trials, yet ethnic minority groups remain underrepresented in research. The disparity of diseases in ethnic communities has been highlighted by the COVID-19 pandemic, as UKR&I research shows one in three patients admitted to critical care with COVID-19 have been from an ethnic minority group – even though they make up only one in eight of the UK population.
There are several diseases including cancer where the prevalence of disease varies in different groups: for example, according to the American Cancer Society, the incidence of cancer in the United States is highest in African-Americans followed by Caucasians, Hispanics, Asian-Americans and American Natives.
Further, these statistics show that there is a clear disparity in how different cancer types can affect ethnic minority groups, for example, Prostate Cancer is the most commonly diagnosed cancer in black men, and breast cancer in black women.
These issues go beyond disease disparity as on the other side of the equation it has also been found ethnic communities can show a varied response to therapies and medical devices so that these products are not fully standardised or generalisable to the whole population e.g. People of African descent respond differently to hypertension drugs and have been found to metabolise anti-HIV drugs e.g. Efavirenz less efficiently; white and black patients metabolise some antidepressants and antipsychotics less well than those of Asian descent. it is now known that pulse oximeters can give variable readings according to the pigmentation of skin and therefore differential chances of hospitalisation when needed for people of different skin colours; questions about research for pulse oximeter technology have been raised, given its original development in populations that were not racially diverse as discussed recently by the secretary of state, Sajid Javed.
Shifting the needle
Despite a growing awareness on patient diversity in clinical trials, the needle has barely shifted, clinical trials are still driven by recruitment targets and an emphasis on numbers without much consideration given for the trial design to be inclusive.
It is important the researchers & investigators embrace the notion that – One size does not fit all. Investigators need to think about and plan for as well as review inclusion in trial protocol development. There needs to be greater emphasis and encouragement to incorporate trial design and grant & funding applications that are inclusive. Patient Public Involvement (PPI) activities sometimes unintentionally become tick box exercises to satisfy regulatory body criteria or grant application requirements. However, the reality remains that better planned and early PPI activity with a strong element of inclusion and diversity bring added value, richness and perspective that impacts the overall quality of research.
The Cancer Research UK Toolkit provides advice & points researchers towards patient public involvement. For guidance and examples and of greater inclusion of diversity in clinical trials, the NIHR INCLUDE guidance & work streams for trial set up & funding applications can be used.
It is also important that public engagement strategies should always be sensitive and mindful about potential causes of mistrust for research in ethnic communities and be culturally competent.
The Future & Beyond
Cutting edge technologies, precision medicine and Artificial Intelligence (AI) used is now heralded as the future of healthcare provision and research.
Identification of at-risk individuals and early screening methods that have designed algorithms using current data, which is not always representative or inclusive of the whole population creating a continued disparity in research for future innovations.
There are no quick fixes for increasing diversity in research, but the solutions may lie in embracing the diverse differences that ethnic communities may have and using the tools we already have to start building bridges so that research can truly be for all.
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