Image Credit: © Jakub Krechowicz – stock.adobe.com
Healthcare research represents a frontier where new drugs, behavioral interventions, diagnostics, and screening are developed to improve the lives of patients. Studies have shown that participation in clinical trials improves patient outcomes, response to treatment, and quality of life while reducing all-cause mortality, compared to patients who received conventional treatment.1–3 Yet, many individuals from underrepresented racial groups are not able to reap the benefits of clinical trial participation, exacerbating the health disparity.4,5
Racial color-blindness—the belief that race should not and does not matter in how people navigate their lives—is adopted by many healthcare institutions and the front-line healthcare professionals they employ.6 At its core, this belief reflects a post-racial society where racism does not exist, and the color of one’s skin does not dictate or influence how a person interacts with and navigates the world. Unfortunately, we know that this is not the case, and that the adoption of such a view is problematic for a few reasons. First, it negates and diminishes the lived experience of racial minorities, including Black, Latino, and Asian Americans who do, in fact, face different forms of systemic and interpersonal discrimination.7–9 Second, the belief that race does not matter perpetuates the idea that discrimination is a thing of the past, reducing efforts to address inequitable practices and behaviors, perpetuating discrimination.
Color-blind ideologies espoused in the US healthcare system were evidenced during the COVID-19 pandemic when healthcare leaders provided inadequate explanations to account for racial disparities of morbidity and mortality rates related to COVID-19.10 These types of attitudes influenced by color-blind ideologies held by industry leaders can permeate among healthcare providers, affecting everyday decision-making that can affect the types of medical outcomes for underrepresented patients.11 One such area are decisions related to clinical trial referrals – whom physicians decide to inform and refer to clinical trials.
In fact, a study examining bias and stereotyping among healthcare providers and research staff in oncology clinical research found that most referring physicians exhibited color-blind attitudes and were likely to express racial stereotypes.11 This is problematic given that referring physicians play an important role in connecting patients to clinical trial studies. Indeed, the research suggests that referral by a provider is one of the most effective means of recruiting racially underrepresented participants into clinical trial studies, particularly for diseases such as cancer where enrollment into oncology studies are heavily influenced by physicians’ input. Physicians play a more instrumental role in prescribing the type of treatment cancer patients receive than other non-chronic conditions.12 Yet, existing research also highlights that physicians are reluctant to refer non-White patients to studies driven by perceptions that racially underrepresented patients are distrustful towards medical research and therefore will not participate.13,14 These perceptions can be exaggerated by color-blind attitudes, which can encourage physicians to downplay the importance of efforts and resources to target, recruit, and enroll patients based on their race.
Given the potential for color-blindness to negatively impact the odds of underrepresented communities from learning about and eventually participating in clinical trials, we at Tufts University have begun examining the prevalence and impact of color-blindness among healthcare professionals. As part of this effort, we collaborated with Society for Clinical Research Sites (SCRS) to measure racial color-blindness among front-line healthcare professionals who can refer patients into clinical trials. So far, we have collected responses from more than 281 healthcare professionals in the US who are able to inform patients about clinical trial studies.The data revealed that 97% of respondents were clinical research staff, while 3% were non-clinical research staff. Most respondents (81%) worked at university-affiliated hospitals or academic medical centers, followed by 8% at non-profit medical centers and 7% at for-profit medical centers. Most respondents held clinical or operational roles (72%), with 23% in clinical leadership roles. The sample (N = 281) was 67% White, 14% Asian, 11% Black, 4% Latino/a, and 4% Mixed. Gender distribution included 54% female and 46% male.
The results showed that among our sample, there was a range in perceptions of racial color-blindness, with some participants reporting higher scores, indicating stronger endorsement of color-blind attitudes, and some reporting lower scores, indicating endorsement of more color-aware attitudes (Min: 1.0; Max: 5.9, Mean: 3.2). We found that color-blind attitudes were linked to perceptions of adherence for non-White patients, where those who reported higher color-blind scores were more likely to view them as being less likely to adhere to the study protocol. While this pattern was true for Black, Latino and Asian patients, it was strongest for Black patients. These results suggest that color-blind racial attitudes can influence decision-making related to referrals, confirming a previous qualitative study done among oncology research professionals which found that color-blind attitudes were prevalent among the front-line providers responsible for screening and recruiting potential racially underrepresented participants.11
Our study contributes to the growing body of work that demonstrates the need for adopting an identity-conscious approach in healthcare research. We do so by showing preliminary evidence linking color-blind attitudes to perceptions of adherence highlighting how holding stronger color-blind attitudes is related to lower perceptions of study adherence, particularly for Black patients. Believing that race does not matter in how people navigate and experience the healthcare research system can hinder efforts to adapt the content and delivery of messaging that can help raise awareness and educate patients about clinical trials as a potential treatment option. Holding this view can also blind institutions and leaders into the false assumption that their recruitment and referral strategies do not need to be tailored and optimized for different communities.11
Our research efforts underscore the need for clinical research stakeholders to adopt a color-aware approach that acknowledges the lived experiences, including the unique hardships that underrepresented racial communities face in healthcare research and adapting referral and recruitment efforts and strategies that can help bridge the gap.15 Healthcare providers can make a concerted effort to start having conversations focused on educating and building awareness of clinical trials with their Black, Latino, and Asian patients, who are less likely to learn about clinical trials than White patients.15 Within these conversations, healthcare providers can tailor the messaging for different groups, adapting communication to acknowledge the unique challenges of different racial groups. For example, mistrust in the medical system among Black, Latino, and Pacific Islander communities can be addressed by acknowledging their apprehension towards medical research due to unethical, historical events (i.e., Tuskegee syphilis study on Black men; sterilization of Puerto Rican women; and use of contaminated vaccines on Filipinos) and spending time dispelling concerns about medical research as being dangerous to build trust. Additionally, measures such as making content available in languages such as Spanish, Chinese, and Arabic for non-native English speakers can help improve the information gap.16 These efforts may seem incremental, but done consistently over time can help build confidence and trust towards clinical research among patients from racially underrepresented communities, while providing patients with more options when it comes to managing their health.
Jennifer Kim, Tufts Center for the Study of Drug Development, Tufts School of Medicine; Keith Maddox, Department of Psychology, Tufts University; Madison Ford, Tufts Center for the Study of Drug Development, Tufts School of Medicine; Marissa Hill, Society for Clinical Research Sites
References
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