The issue of underrepresentation in healthcare trials is a pressing concern in the field of medical research. The lack of diversity in clinical trials has far-reaching consequences, affecting the development of treatments and interventions that are effective for all segments of the population. Addressing this issue is crucial for achieving equitable healthcare outcomes.
The National Institute of Health’s National Institute on Minority Health and Health Disparties makes the case quite concisely: “People may experience the same disease differently. It’s essential that clinical trials include people with a variety of lived experiences and living conditions, as well as characteristics like race and ethnicity, age, sex, and sexual orientation, so that all communities can benefit from scientific advances.”
Consider the implications of gender-based disparities in diagnosing heart disease. A prevailing misconception is that this condition primarily affects men, but in reality, it is the leading cause of death for both genders. What makes this issue even more complex is that a significant portion of diagnostic tests were originally developed and validated based on data from male subjects. Furthermore, it is crucial to recognize that symptoms of heart disease can manifest differently in women than in men. These differences can be subtle, leading to potential misdiagnoses or delayed diagnoses. Such oversights can increase the risk of heart attacks and other cardiac events.
There are geographical obstacles as well. Industry sponsors tend to gravitate toward the same established research sites and investigators repeatedly, which typically do not serve underserved populations and often lack easy accessibility for diverse communities. These favored sites and investigators are predominantly located in areas where patients have better insurance coverage and are generally in better health. Furthermore, federally sponsored research tends to be carried out at major medical centers that have limited interaction with community-based clinicians.
Healthcare trials must reflect the diversity of the patient population, including participants from various racial, ethnic, and gender backgrounds. To that end, technology can be of use. Rather than relying on traditional sites, sponsors can leverage AI tools like Trial Pathfinder, developed by Stanford researchers to promote diversity in oncology trials. There are various platforms engineered to pinpoint patients with specific medical conditions and locate suitable trial sites. These systems take into account various factors such as proximity to patient communities, accessibility to public transportation, and other convenience-related criteria. Once potential participants and healthcare providers are identified, they can be readily invited to participate in the trials, fostering a more inclusive participant pool.
In a sign that we are moving in the right direction, Oklahoma State University and the University of Hawaii, partners in the Center for Indigenous Innovation and Health Equity, recently received $10 million from the U.S. Department of Health and Human Services. This grant underscores the growing recognition of the need for culturally appropriate approaches in addressing healthcare disparities, particularly among historically disadvantaged communities.
As part of these efforts, we need to ensure that we focus on diversifying healthcare trials. Representation is not just an issue of ethics; it is a matter of good science and compassionate healthcare. It is an essential path in promoting a healthier future for all, and it’s a journey worth embarking upon.
Having worked on all sides of the healthcare industry, Karen Walker Johnson brings a vast and diverse set of skills and expertise to her leadership roles. She has focused her passion of leading teams to improve the health status of vulnerable populations. Devoted to exploring how healthcare disparities and social determinants play a role in individuals’ health, Karen actively explores new approaches to solve the healthcare problems of today. The knowledge and energy she brings to the table are an asset to corporate boards.
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