Diversity, equity, and inclusion (DEI) are critical pillars in the evolving landscape of cancer research. These values not only shape scientific inquiry but also directly impact the applicability and success of clinical trials, particularly among underrepresented populations. While DEI initiatives are gaining prominence, much work remains to integrate these principles into the fabric of clinical research.
The Importance of DEI in Cancer Research
Limited diversity in cancer research results in findings not fully reflecting the complexities of cancer as experienced by different populations. Without a diverse participant base, clinical trials may fail to provide comprehensive, generalized data to underserved groups, leaving a gap in treatment efficacy for minority populations.
Despite the growing awareness of DEI, many clinical trials still lack adequate representation from populations such as African American, Latinx, and other minority groups. Several factors contribute to this issue, including a long-standing mistrust of the medical system, logistical barriers, and financial constraints disproportionately affecting these communities.
Understanding the Distinction Between Diversity, Equity, and Inclusion
A nuanced understanding of DEI is crucial for successfully addressing gaps in clinical trial participation. Diversity refers to the presence of differences, such as race, gender, and socioeconomic status, within a given setting. However, diversity alone does not guarantee an inclusive or equitable environment. In other words, a diverse clinical trial team or participant pool does not automatically ensure everyone feels valued or included.
Equity goes a step further by ensuring equal access to opportunities and resources, recognizing individuals start from different places due to systemic barriers. For clinical trials, this means acknowledging and addressing the unique challenges faced by minority populations, such as health insurance coverage and the logistics of trial participation.
Building Trust With Minority Populations
A significant barrier to improving DEI in cancer research is the mistrust many minority populations feel toward the medical system. This mistrust is rooted in historical injustices, such as the Tuskegee Syphilis Study and unethical medical practices involving Black Americans. Recent studies continue to highlight this deep-seated mistrust, with 55% of Black Americans expressing distrust in the healthcare system.
To overcome this, building relationships through consistent presence and follow-up can help rebuild trust. Moreover, having diverse clinical research teams reflecting the communities they serve can go a long way in fostering trust and encouraging participation.
Strategies for Improving DEI in Clinical Trials
Improving diversity in clinical trials requires a multi-faceted approach, including the following strategies:
- Community engagement: Establishing strong ties with the community through advisory boards and direct involvement in trial design.
- Rethinking eligibility criteria: Many minority patients are excluded from trials due to comorbid conditions more prevalent in underserved populations. Revising inclusion and exclusion criteria to accommodate these conditions can increase minority participation.
- Reducing participation barriers: Logistical challenges, such as transportation and time commitments, often deter participation. The FDA’s guidance on enhancing diversity in clinical trials suggests reducing the burden on participants by increasing visit windows, allowing for virtual communication, and decreasing visit frequency.
- Policy changes: Recent legislation, such as the Clinical Treatment Act and the Henrietta Lacks Enhancing Cancer Research Act, aims to eliminate systemic barriers to trial participation. The Clinical Treatment Act, for instance, mandates Medicaid coverage of routine costs associated with clinical trials, removing a financial hurdle for many patients.
The Role of Cancer Centers in Advancing DEI
National Cancer Institute (NCI)-Designated Cancer Centers play a crucial role in advancing DEI within their catchment areas. These centers are expected to engage their local communities, particularly underrepresented groups, to reduce cancer burdens. Cancer centers can enhance minority recruitment by creating community advisory boards, involving community members in trial design, and maintaining a diverse research pipeline.
The Future of DEI in Clinical Research
As we look to the future, DEI efforts must be at the forefront of cancer research and clinical trials. Priorities include increased funding for research on structural barriers to participation, broader community engagement, and better representation in biorepositories to ensure comprehensive genetic research.
Additionally, policies supporting diversity in clinical trials must continue to evolve, including addressing the digital divide. As clinical trials increasingly rely on electronic communication, there is a risk of excluding those without access to digital resources, further exacerbating participation disparities.
Addressing DEI in cancer research is a multifaceted challenge requiring collaboration across research teams, community partners, policymakers, and healthcare institutions. By prioritizing trust-building, removing barriers, and rethinking traditional approaches to clinical trials, we can move closer to a more equitable and inclusive research landscape—one benefitting all populations.
