Listen First: Engaging Black and Brown Communities in Research

Research without representation yields incomplete—and often inaccurate–answers. While the pharmaceutical industry recognizes this, many organizations still treat engaging Black and Brown communities in research as a recruitment challenge rather than a chance to build lasting relationships.

The difference between asking for participation and inviting engagement isn’t just semantics—it’s a seismic shift that can determine clinical research’s success or failure. When communities feel invited into the research process, rather than just recruited for it, authentic partnerships emerge. And authentic partnerships deliver results.

Trust-Building in Underrepresented Populations Helps Boost Engagement

The deep roots of medical distrust within communities of color should inform any engagement strategy. Unethical medical experimentation, including the infamous Tuskegee Syphilis Study, has created generational trauma that continues to influence healthcare decision-making today.

But while the Tuskegee Study exposed a horrifying case of medical racism in 1972, the effects of racial and ethnic care gaps continue over 50 years later. This persistent inequity is perhaps most evident in maternal health, where Black women face a mortality rate nearly three times higher than that of white women. It’s only natural that when people of color experience inequitable health outcomes, this leads to further distrust in the system that is supposed to help them. 

Distrust in healthcare surged during the COVID-19 pandemic, especially among communities of color, who faced disproportionately high rates of infection, hospitalization, and death. A long history of medical injustice, combined with ongoing experiences of bias in healthcare, led many to hesitate or refuse the vaccine. This response underscored just how challenging it is to build trust in communities that have been repeatedly marginalized. 

Trust-building in underrepresented populations requires not only acknowledging the complex history of medical racism but also demonstrating, through consistent action, that current research practices are grounded in community benefit and respect for individual dignity. The goal isn't to overcome objections—it’s to earn trust through genuine, sustained engagement.

Earning trust is just the first step, however. Maintaining it calls for rethinking how research is conducted—starting with deeper collaboration and community-driven design.

Culturally Responsive Research Practices Demand a Commitment to Change

True cultural responsiveness in research extends far beyond translating materials or hiring diverse staff. It requires reimagining how research studies are conceived, designed, and implemented. This starts with gathering community input during protocol development, ensuring that the research questions, methodologies, and outcomes reflect the lived experiences and priorities of the populations participating. A collaborative approach is essential for successfully engaging Black and Brown communities in research.

Communities of color know their own health experiences, social contexts, and cultural values better than anyone else. When research teams actively incorporate this community-specific knowledge into study design, they create investigations that feel relevant and respectful to potential participants. The result is research that serves the study’s objectives while addressing questions that matter to the communities making the research possible.

Effective cultural responsiveness also means effective communication strategies. Messages that resonate often emphasize collective benefit, community empowerment, and cultural pride rather than individual health outcomes alone.

Acclinate’s Approach to Trust-Building in Underrepresented Populations

At Acclinate, we’ve developed a framework that prioritizes affective trust—emotional connection and shared values. This distinction is crucial when engaging Black and Brown communities in research.

The NOWINCLUDED platform perfectly embodies this approach to engagement. It connects pharma companies with trusted community leaders, leveraging existing relationships and keeping community voices at the center of engagement. Acclinate’s e-DICT solution further supports this strategy by providing culturally aligned communication tools that help research teams connect with communities in ways that feel authentic and respectful. These tools recognize that effective communication with communities of color often requires approaches that differ from traditional academic or medical communication styles.

Bridging gaps in multiple myeloma research

The Challenge

Multiple myeloma is the most common hematologic malignancy among Black and African Americans, yet they represent only 4% of enrollees in clinical trials supporting FDA approval of multiple myeloma drugs. This disparity reflects longstanding barriers to engagement and the urgent need for greater representation in research.

The Approach

From April to October 2024, Acclinate partnered with the Multiple Myeloma Research Foundation (MMRF) to address these inequities through community-centered events in Atlanta, Detroit, Philadelphia, and Birmingham, Alabama. Each event was designed to reflect the culture and needs of the metro area, featuring panels, patient stories, and trusted partnerships. Educational and engagement materials were shared in ways that were both practical and culturally resonant, fostering open dialogue and building trust.

This partnership shows how culturally responsive research practices can overcome traditional barriers to engagement. By hosting community-centered events that reflect the culture and needs of each metro area, sharing practical and culturally resonant information through panels and patient stories, and partnering with trusted organizations, Acclinate created pathways for meaningfully engaging Black and Brown communities in research while both respecting their preferences and addressing the urgent need for representation in multiple myeloma research.

Driving maternal and fetal health equity

The Challenge

Black women face disproportionately high rates of maternal mortality and morbidity, making maternal and fetal health one of the nation’s most urgent health equity issues. Addressing this requires more than one-off outreach efforts—it calls for sustained trust and ongoing support.

Approach Across one year, Acclinate accessed, engaged, and mobilized BIPOC women and birthing persons of child-bearing age through its NOWINCLUDED platform. By providing educational tools, peer connections, and culturally resonant content, the initiative offered ongoing value and created a trusted environment where research participation became a natural progression of community involvement.

This initiative underscores that trust-building in underrepresented populations requires sustained engagement —not just outreach tied to a single study. Through its NOWINCLUDED platform, Acclinate delivers ongoing value in the form of educational tools, peer connections, and culturally resonant content. This long-term support fosters an environment where research participation becomes a natural progression of community involvement, not an isolated ask.

Representation at Every Touchpoint

Meaningfully engaging Black and Brown communities in research requires representation that extends beyond enrollment to every stage of the research process. This includes assembling diverse research teams, empowering community advisory boards with decision-making authority, and creating communication materials that reflect participants’ cultural values and lived experiences.

When communities of color see themselves in research leadership, study materials, and communication strategies, they receive powerful signals about the research team’s commitment to inclusion. This demonstrates respect for community knowledge and opens the door to meaningful conversations about research priorities and processes.

But representation alone isn’t enough. The individuals representing communities of color need genuine authority within research organizations. Performative representation can damage trust by creating the appearance of inclusivity without any actual community influence.

Why Long-Term Relationships Outperform Short Campaigns

Building lasting engagement and effectively engaging Black and Brown communities in research requires more than study-specific recruitment efforts. Given the long history of exploitation, marginalization, and neglect that Black, Indigenous, and other communities of color have faced  from research institutions, many remain understandably cautious about new partnerships. Trust is earned through patience, consistency, and an honest commitment to the community’s well-being over time.

Acclinate’s work in inflammatory bowel disease (IBD) research highlights the impact of this approach. Although IBD was once seen primarily as affecting white populations, rates of Crohn’s disease and ulcerative colitis among Black and Hispanic communities increased 134% from 1970 to 2010. Over 15 months, Acclinate connected with more than 1.5 million community members through NOWINCLUDED’s gut health community circle initiatives, engaging nearly 48,000 members via an omnichannel strategy.

This initiative revealed critical insight: While over half of respondents expressed willingness to participate in IBD research, only 6% had ever enrolled in a clinical trial. The gap reinforces that trust-building in underrepresented populations depends on more than study-specific outreach—it demands confronting the systemic barriers that prevent equitable participation.

Adopting a long-term engagement strategy means nurturing community connections between studies, delivering consistent value to partners, and ensuring that research outcomes benefit those communities. When pharmaceutical companies invest in enduring community relationships, they create pathways for future collaboration while showing genuine commitment to health equity.

Invite, Don’t Recruit: From Study Participation to Legit Partnership

Clinical research must move beyond transactional recruitment and toward building inclusive, equitable environments that serve all communities. This shift requires more than new tactics—it demands a new mindset rooted in humility, partnership, and respect.

By focusing on affective trust, implementing culturally responsive research practices, and investing in long-term relationships, pharmaceutical companies can create programs that advance health equity and improve outcomes for all populations.

Engaging Black and Brown communities in research isn't just about hitting diversity metrics—it’s about transforming research into a space where all voices are valued, all experiences are honored, and every community is served. When that happens, the entire healthcare system moves forward with more effective treatments, more inclusive innovation, and better outcomes.

Want to learn more about our Affective Trust Framework? Schedule a 1:1 meeting with our team.