In recent years, organizations in all industries have increased their emphasis on diversity, equity, and inclusion (DE&I). In healthcare, the added focus on DE&I is more than a business objective or regulatory requirement. It’s also a moral imperative to provide appropriate care for all patients regardless of race, ethnicity, gender, or sexual orientation.
Both recent and historical events explain healthcare’s push for change. During the pandemic, communities of color had higher mortality rates from COVID-19 as well as lower COVID-19 vaccination rates compared to white Americans, according to the Kaiser Family Foundation. These disparities, in turn, helped call attention to longstanding gaps in the medical services available to communities of color and their impact on treatment pathways and clinical outcomes.
This problem is especially evident in the gaps in clinical research, where statistics show that racial and ethnic minorities make up 38.7% of the U.S. population, but their rates of inclusion in trials range from a high of 16% to as low as 2%. African American and black participation rates are lower than 5%. It will take an industry-wide effort to right these wrongs across the healthcare ecosystem – from drug development to clinical assessment to educating and hiring a more diverse workforce.
A historic lack of diversity, equity, and inclusion in healthcare is reflected in the quality of services available to communities of color – and, as a result, the clinical outcomes they have.
Data from the Centers for Disease Control and Prevention (CDC) has indicated the disease burden for obesity, Type 2 diabetes, and other preventable chronic conditions is higher in communities of color. Similarly, Black patients have the highest cancer mortality rates in the U.S., due in large part to the increased likelihood of a later-stage diagnosis, the Kaiser Family Foundation said. Additional CDC data showed Black women are three times as likely to die during pregnancy or after childbirth as White women.
Many factors shape these disparities. When it comes to cancer, research shows that patients from communities of color receive screenings at lower rates than white patients, are less likely to be referred for surgery or chemotherapy and are more likely to report unmet needs for managing pain or side effects. This stems from a combination of barriers to accessing care, such as high costs, inadequate transportation, or poor insurance coverage, as well as bias and discrimination throughout the screening, diagnosis, and treatment processes.
Disparities also boil down to implicit bias. Misperception of how Black patients experience pain means they are less likely to receive appropriate treatment when they need it. Meanwhile, racial essentialism, or the erroneous belief there are biological differences among races, is persistent in clinical algorithms used to assess a patient’s level of risk or guide treatment decisions for a wide range of decisions. As the New England Journal of Medicine said, “these race-adjusted algorithms guide decisions in ways that may direct more attention or resources to white patients than to members of racial and ethnic minorities.”
Recently, the American Medical Association (AMA) indicated diversity, equity, and inclusion should be part of every healthcare conversation. This includes but is not limited to frontline patient care, medical education, and pharmaceutical product development. Though these conversations are indeed daunting, organizations can take practical steps aimed at steady and measurable improvement to affirm their understanding of the importance of diversity in healthcare and healthcare research.
One provision of the 2022 Health Equity and Accountability Act would help hospitals and health systems hire physicians from communities of color “to ensure providers are representative of the patients that they serve.” A report from Michigan Medicine noted a range of clinical outcome improvements when patients and physicians share race or ethnicity, from better medication adherence to shorter wait times for treatment to better understanding of treatment decisions. Beyond the care experience, a second JAMA paper found a higher percentage of Black primary care physicians is associated with higher life expectancy among Black patients.
In November 2020, the AMA pledged “to counteract the notion of racial essentialism.” The organization offered numerous suggestions for moving forward to address diversity, equity, and inclusion in healthcare: Revise existing clinical algorithms, partner with quality improvement organizations, and “hammer home” the point that race-based research is inconsistent.
That said, different institutions have vastly different access to clinical and technological resources for determining what level of care or type of treatment is appropriate. As a result, the AMA noted nationwide advocacy efforts for change may be necessary, beginning (at a minimum) with a push for more equitable distribution of resources.
A recent paper in Health Affairs found fewer than 20% of approved drugs included data on treatment benefits or side effects for Black patients, while a Lancet literature review found more than 20% of clinical trials had no enrollees from communities of color. Why is diversity in clinical trials important?
Diversity in clinical trials is important for a few key reasons. From a regulatory perspective, the Food and Drug Omnibus Reform Act of 2022 (FDORA) specifically requires organizations to develop “diversity action plans” for certain late-stage trials for drugs and devices. In addition, physicians can make more informed prescribing decisions when they know a particular therapy has proven results for patients in traditionally underrepresented populations. Organizations that proactively recruit clinical trial participants from communities of color will develop therapies that meet regulatory requirements – and address the needs of patients who all too often have been overlooked.
While the push to address diversity and inclusion in healthcare is long overdue, stakeholders across the industry continue to explore how they can improve everyday operations and refine best practices to provide equitable access to care. Pharmaceutical companies can play a critical role by ensuring their clinical trials enroll more diverse patients and their products demonstrate efficacy and safety for all patient populations, not just those who are easy to recruit.
Boost inclusivity in trials faster and for the long term by zeroing in on the populations you lack. Acclinate gives you access to communities of color, facilitates engagement around your trials, and then analyzes the data generated to predict and plan where and when your next effort should happen to create the ongoing representation you need. To learn more, schedule a 1:1 Meeting.