Importance of Engagement and Outreach in Underrepresented Communities for Clinical Trials

Learn how to engage underrepresented communities and enhance diversity in clinical trials

Jessica Jones, CEO & Founder, STAND UP 2 Breast Cancer
May 24, 2023
clinical trials, communities of color

Clinical research has witnessed remarkable advancements in recent years, resulting in notable improvements in participant health and safety, groundbreaking treatment breakthroughs, and the extension of individuals' life spans. These achievements stand as a testament to the dedication and innovation of researchers worldwide. Nevertheless, amid this progress, there remains a critical area that calls for urgent attention and improvement: the representation and diversity of participants in clinical trials. Despite the remarkable strides made, there are persistent shortcomings in the ability to ensure adequate representation and inclusivity in these trials, hindering the equitable distribution of benefits across diverse populations. Addressing this issue is vital to fostering a more inclusive and comprehensive understanding of medical interventions, as well as promoting health equity for all.

According to Dr. Robert A. Winn, Director of VCU Massey Cancer Center, and Diversity in Clinical Trials Award Program, 80% of individuals involved in clinical trials are white, despite representing 58% of the U.S. population as a whole. While Black Americans make up about 8% of participants in clinical trials but represent 13% of the U.S. population, and Hispanics account for 11% in trials, even though they are 16% of the national population. This lack of diversity negatively impacts the healthcare received by underrepresented communities. Engagement and outreach with communities of color is paramount to addressing this issue. Historically, these communities have been underrepresented in medical research, leading to significant health disparities and inequities in clinical outcomes.  

By actively engaging and involving underrepresented racial and ethnic groups in clinical trials, researchers can ensure that the benefits of medical advancements are accessible to all populations. Additionally, including diverse participants in trials allows for a more comprehensive understanding of how medications, treatments and interventions may affect different racial and ethnic groups. It also enhances the generalizability of research findings, enabling healthcare providers to deliver personalized and effective care to individuals from all backgrounds. Here are some strategies to engage underrepresented communities and enhance diversity in clinical trials:

Build trust with providers and researchers to dispel misconceptions about clinical research

  • Cultivate community partnerships: Establish partnerships with local community organizations, faith-based groups, community leaders and advocacy organizations that have existing relationships and trust within the underrepresented communities. Collaborating with these organizations can provide access to community networks and facilitate meaningful engagement.
  • Conduct outreach in trusted spaces: Conduct outreach activities in places where community members feel comfortable and safe, such as community centers, places of worship, local clinics or cultural events. This approach helps create a familiar and inclusive environment for discussions about clinical trials.
  • Utilize community health workers: Identify and engage trusted individuals within the underrepresented communities who can serve as messengers and advocates for clinical trials. These individuals may include healthcare providers, community leaders, patient advocates, or influential community members. Their support and endorsement can help build trust and credibility within the community.

Provide education for diverse populations

  • Tailor communication and education materials: Develop culturally appropriate and linguistically sensitive materials that resonate with the targeted underrepresented communities. Use plain language and visual aids to effectively communicate complex concepts. Consider translating materials into relevant languages spoken within the community.
  • Engage in community education events: Organize educational events, workshops, or town hall meetings focused on clinical trials. Provide opportunities for community members to ask questions, share concerns and participate in discussions. These events can help demystify clinical trials, address misconceptions and promote informed decision-making.
  • Offer community health education programs: Collaborate with community organizations to provide ongoing health education programs that include information about clinical trials. These programs can cover topics such as the importance of research, understanding informed consent, and navigating the healthcare system. Ensure that the programs are culturally sensitive and tailored to the community's specific needs.
  • Engage with cultural competence: Develop a deep understanding of the cultural values, beliefs, and traditions of the targeted underrepresented communities. Show respect for cultural practices, incorporate cultural traditions into engagement efforts, and ensure that the research process aligns with community values and preferences.

Identify and resolve barriers to clinical trial participation

  • Address barriers and incentivize participation: Identify and address barriers to participation, such as language barriers, cultural beliefs, financial concerns, childcare, scheduling conflicts, etc. Find programs that offer incentives that are meaningful to the community, such as reimbursement for transportation costs, childcare support or compensation for time and participation.
  • Provide transportation and accessibility support: Lack of transportation and other logistical challenges can be barriers to participation. Offer transportation assistance or collaborate with local transportation services to facilitate community members' attendance at clinical trial-related activities. Additionally, ensure that the trial sites are accessible and accommodating to individuals with disabilities or other specific needs.
  • Continuously evaluate and adapt strategies: Regularly assess the effectiveness of engagement strategies and make necessary adjustments based on community feedback and outcomes. Engage in ongoing dialogue with community members to ensure that their voices are heard, and their concerns are addressed throughout the research process.

It's crucial to engage underrepresented communities in clinical trials. Proactive planning and resource allocation is needed to overcome specific challenges, such as improving cultural competency, addressing language barriers and implementing community-based recruitment and education initiatives. By taking action, we can establish inclusive research practices that promote diversity, enhance scientific rigor, and ultimately lead to better health outcomes for racially diverse communities.

Check out a recent blog to learn about how to reduce disparities in clinical trials and financial toxicity for patients.  

About the Author
Jessica Jones is a registered nurse working at the University of Pennsylvania. She specializes in caring for individuals diagnosed with breast cancer. Jessica holds an undergraduate degree in Public Health from Temple University and a second degree in Nursing from the University of Pennsylvania. She completed her Master's Degree in Public Health Nursing from Johns Hopkins University. During her time as a clinical research nurse at the University of Pennsylvania, Jessica developed a passion for research and patient advocacy, especially in increasing diversity in clinical trials. This led her to start STAND UP 2 Breast Cancer, an organization focused on empowering individuals with breast cancer, providing access to supportive resources, and promoting diversity in clinical trials. Lastly, Jessica is a guest lecturer at the University Pennsylvania School of Medicine and a Committee Member of Diversity, Inclusion and Health Equity at the Abramson Cancer Center.