Health Literacy and Diversity, Equity and InclusionIt’s time we reexamined how improving health literacy using effective communication methods can serve as extensions of patient care when placing diversity, equity, and inclusion (DEI) initiatives at the forefront of our patient recruitment and retention strategies. Historically, significant disparities have existed in effectively engaging diverse populations for clinical trials. To advance medical research and improve patient engagement with all groups, we must address the impact of historical biases, cultural differences, socioeconomic factors, and healthcare access within our healthcare system. While addressing such complex issues will take time, we can initiate incremental change by improving our communication practices with patients and participants of clinical research.

Health literacy refers to an individual’s ability to obtain, process, and understand health-related information to make informed and empowered decisions regarding their healthcare. Today’s DEI initiatives often seem to only focus on marginalized, vulnerable, and financially insecure communities, with a particular emphasis on race. However, we believe this approach is inherently flawed as it assumes that low health literacy levels solely impact these demographics. In reality, the prevalence of low health literacy affects all populations, regardless of racial, economic, educational, and social boundaries, which results in a lack of engagement with clinical trials.

The responsibility for our collective health literacy extends beyond individual patients and encompasses our entire system. We must recognize that people have varying preferences for receiving information, and numerous factors related and unrelated to health literacy can influence a patient’s decision to participate. Therefore, to improve recruitment, engagement, and retention and effectively communicate the role clinical trials play in the advancement of future medicines, we should first address the following:

Acknowledge and Empathize with Historical Injustices

Marginalized communities have harbored deep mistrust and fear of discrimination for decades stemming from their exclusion and exploitation in historically unethical practices. To address present-day inequities, it is imperative that we meaningfully confront these past injustices as they contribute to entrenched biases based on factors such as race, religion, sexual orientation, and gender identity.

Addressing systemic and institutionalized health inequities requires a comprehensive communication effort at the enterprise level. Participants should have a fundamental understanding that clinical trials are subject to stringent regulations and oversight to ensure the protection of study participants. It is equally important to convey that participating in clinical research will not impact the quality-of-care individuals receive in or out of the study. Therefore, we must educate patients on the protections, privileges, and rights upheld for all clinical study participants and consistently integrate this messaging into our branding and recruitment materials.

Address Cultural Differences Among Healthcare Providers and Their Patients

Our efforts should extend beyond acknowledgment and empathy to truly address the impact of historical injustices. We must actively challenge our personal biases as they can have significant repercussions on the healthcare experiences of minority groups. Failing to do so can perpetuate disparities, resulting in differential treatment, negative encounters with healthcare providers, and insufficient provision of information, empathy, and attention for these minorities, especially when compared to their White counterparts.

Furthermore, the lack of familiarity with the cultural norms, customs, or traditions of different racial and ethnic groups can lead to potential miscommunications, particularly because our branding and messaging have the potential to emphasize those feelings of exclusion. Although it is impossible to be knowledgeable about every culture or ethnicity, we can still strive to be sensitive towards communities and individuals who differ from our own.

To address these systemic issues, we must continually educate ourselves about these cultural differences whenever and wherever possible. By doing so, we can take necessary measures to ensure that Informed Consent Forms, educational and study materials, and all other recruitment, engagement, and retention practices align with and demonstrate respect for all ethnic and cultural norms, customs, or traditions of diverse communities.

Consider Socioeconomic Factors Limiting Participation

Numerous factors beyond cultural and historical references could prevent a patient from participating in a clinical trial. We cannot overlook and underestimate the socioeconomic challenges patients face as they create daily barriers that would make study participation and engagement an undue burden. Therefore, we should consider the factors contributing to disparities in patient recruitment, such as low income, education level, geographical constraints, childcare responsibilities, and disability accessibility.

We’ve already taken measures to address some of these barriers. For instance, some clinical trials provide financial assistance and reimburse travel expenses. For someone with limited financial resources or no other means of transportation to a specific study site, addressing this concern could be the decisive factor in their ability to participate in clinical research. It is our responsibility to effectively communicate these incentives in a sensitive and empathetic manner, taking into account an individual’s socioeconomic circumstance.

Improve Healthcare Access in Underserved and Vulnerable Communities

Underserved and vulnerable communities often face the harshest realities of our healthcare system, including poorly maintained facilities, staff burnout, personnel shortages resulting in extended wait times, education, language and health literacy barriers, and financial hardships due to insurance-related difficulties. These issues significantly impede their ability to access quality patient care, which, in turn, may diminish their expectations regarding the care they could receive in a clinical trial.

Rebuilding trust in these communities requires a concerted effort. Our messaging and communication strategies should specifically address their concerns regarding access to quality healthcare. By doing so, clinical research can become a viable and accessible option for the most marginalized individuals, contributing to the overall improvement of our healthcare system.

Integrating health literacy and effective communication strategies is fundamental to advance DEI in clinical trial patient recruitment, engagement, and retention. By adopting these approaches, we can foster inclusivity, trust, and equitable representation in clinical research through several key actions.

First, we should acknowledge and empathize with historical injustices to educate patients about the protections, privileges, and rights afforded to all clinical study participants and build a foundation of trust and transparency. Second, addressing cultural differences between healthcare providers and patients is essential. By aligning messaging with and respecting the ethnic and cultural norms, customs, and traditions of diverse communities, we foster a sense of inclusivity and cultural sensitivity. Third, we must consider socioeconomic factors that may limit participation. By effectively communicating incentives that alleviate daily obstacles to care, we can mitigate these barriers and encourage greater engagement. Finally, improving healthcare access in underserved and vulnerable communities is key. Tailoring our initiatives to address their specific needs helps bridge gaps and ensures equitable participation.

Implementing patient-centered recruitment strategies and promoting health literacy empowers individuals to actively participate in their healthcare, extending beyond clinical trials. Ultimately, these efforts contribute to the equitable provision of healthcare and the advancement of future medicines and scientific knowledge to benefit all.