Case Study
Increasing Clinical Trial Engagement Among Black and Hispanic IBD Patients
overview
Addressing Cultural Barriers to IBD Clinical Trial Participation
A national health-focused nonprofit organization sought to address disparities in clinical trial participation for inflammatory bowel disease (IBD) among multicultural populations—specifically Black and Hispanic communities. This initiative aimed to uncover barriers to trial participation and inform culturally attuned outreach strategies.
Using agile qualitative research, our team helped the foundation understand the unique motivations, fears, and perceptions shaping clinical trial engagement. These learnings laid the groundwork for more effective communication strategies and community engagement tactics.
THE PROBLEM
Cultural and Systemic Barriers to Trial Participation
Despite IBD’s increasing prevalence across diverse populations, participation in clinical trials among Black and Hispanic patients remains critically low. The organization recognized several underlying challenges:
- IBD Underdiagnosis Among Multicultural Patients: General belief is that IBD primarily affects White individuals, which leads to delayed diagnoses and underestimation of disease severity.
- Lack of Clinical Trial Literacy: Most patients had limited or inaccurate understanding of what clinical trials involve, deterring interest and engagement.
- Cultural Beliefs and Historical Mistrust:
- Hispanic patients often leaned on familial influence and home remedies.
- Black patients carried intergenerational skepticism stemming from unethical medical histories (e.g., Tuskegee Study).
- System Navigation Difficulties: Participants struggled with complex healthcare systems and lacked culturally competent care.
The organization needed fast, actionable insights to develop communications that could resonate with these communities and inspire greater trust and trial consideration.
OUR APPROACH
Deep-Dive Qualitative with Cultural Sensitivity
To explore these barriers and inform tailored outreach, we designed a qualitative study grounded in cultural empathy:
- Participant Profile:
- Adults from Black and Hispanic backgrounds diagnosed with IBD
- Mix of trial-experienced and trial-naïve individuals
- Methodologies Used:
- Online in-depth interviews
- Cultural and emotional projective techniques
- Exploratory Themes:
- Awareness of IBD and perceptions of severity
- Familiarity with, and attitudes toward, clinical trials
- Cultural values and family influence on health decisions
- Beliefs around self-reliance, resilience, and medical systems
Insights were shared in an accelerated format to support the foundation’s quick decision-making and content development for awareness campaigns.
The result
Actionable Strategies to Drive Inclusion
The research surfaced key emotional and cultural insights that reshaped the foundation’s strategy:
- Educational Gaps Addressed:
Developed recommendations for simplified materials explaining what clinical trials are, how they work, and their potential benefits.
- Culturally Inclusive Messaging:
Emphasized storytelling featuring relatable patient experiences and values like strength through knowledge, care for family, and community contribution.
- Trust Building:
Identified the importance of transparent communication, peer advocates, and compensation as respectful acknowledgment of participants’ time.
- Tailored Outreach:
Highlighted the need for linguistically and culturally adapted resources, especially for Hispanic audiences.
These findings empowered the nonprofit to craft campaigns that meet multicultural patients where they are—informing, validating, and encouraging them to consider participation in clinical research.
proven experience
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