Clinical research; Why we need to be more involved

The future of global medicine is being written right now in laboratories and clinical trials, yet the chapters on Black health remain disturbingly incomplete. Across the globe, medical breakthroughs are revolutionizing how we treat chronic illnesses, like cancers and diabetes, but these advancements are often standardized to populations that do not reflect Black communities. Many factors contribute to the underrepresentation of Black patients in clinical trials and research, such as a lack of trust stemming from a deeper narrative of historical exclusion and structural barriers. Some Black patients have expressed interest in participating, but are unsure how to get involved, where to find accessible information, and are unaware that they are not being given information about clinical trials by their healthcare providers.

However, the time has come to shift our focus from the barriers that have kept us out to the immense power we hold when we choose to step in and get involved in clinical research. The data reveal a convincing need for Black patients to be actively engaged in health research. In Canada, Black adults experience significantly higher rates of certain chronic conditions compared to the general population. For example, diabetes rates have doubled among Black women in Ontario, reaching 12%, and Black women face a higher risk of developing cardiovascular disease than Black men. Furthermore, ischemic heart disease remains a leading cause of death among Black adults. Despite these realities, Black patients make up less than five percent of oncology clinical trial participants globally, and Canadian data suggest similar underrepresentation. When clinical trials lack diversity, the resulting treatments may be less effective because of differences in drug metabolism or may have unforeseen side effects for Black patients.

Participation in clinical trials is not just an act of scientific contribution; instead, it is a significant stride in health promotion and self-advocacy. Clinical trials provide access to emerging, life-saving treatments and specialized care that may otherwise be unavailable. More importantly, involvement ensures that the genetic, environmental, and social factors unique to African, Caribbean, and Black (ACB) populations are accounted for in the development of new therapies. When trials have adequate Black representation, researchers can identify treatments that work exceptionally well for Black communities, such as specific radiation therapies for prostate cancer that proved more effective for Black men.

Active efforts are underway to demystify the clinical trial process and dismantle the notion that research is done to us rather than with us. Health Canada’s recent Agile Licensing regulations emphasize the collection of disaggregated data (broken down by race, age, and sex) to support new drug submissions, representing a critical policy shift. Organizations like the Canadian Institutes of Health Research (CIHR) are also spearheading initiatives to embed equity, diversity, and inclusion into research frameworks. However, policy changes alone are insufficient.

The narrative that Black communities are entirely unwilling to participate in research is a myth that we should actively dispel. Recent studies in British Columbia and Ontario have highlighted that ACB individuals are highly willing to participate in health research when approached with cultural responsiveness and transparency. However, the most significant barrier to participation in clinical trials is that opportunities are left to clinicians to communicate to patients. Engaging clinicians directly, asking about upcoming studies and how you can participate, is essential.

Taking ownership of our health narratives by initiating conversations with our specialists about research opportunities is an assertion of our right to equitable healthcare. Ask your doctor if there is a clinical trial suitable for your condition. Demand clear explanations of the risks, benefits, and safeguards in place. By participating, we transform the healthcare system from the inside out, ensuring it serves us with the precision and care we deserve. Securing health equity requires our presence at the vanguard of medical research.