Early Patient Education And Community Outreach Are Advancing Representation In Clinical Trials
By Adrelia Allen, executive director, clinical trial patient representation, Merck
Clinical trials are essential to understanding how our bodies respond to investigational medicines or other treatments and how they work across populations. Yet after years of working at the intersection of research and patient engagement, I’ve seen firsthand that participation in clinical trials still doesn’t fully reflect the communities most impacted by disease.
In oncology clinical trials, for example, only 4%–6% of participants are Black and 3%–6% are Hispanic, despite these populations representing a significantly larger share of the cancer burden.¹ More broadly, while more than 40% of the U.S. population identifies as part of a racial or ethnic minority group, only about 24% of clinical trial participants come from these communities.2
While these statistics are well known across the research industry, there needs to be more of a focus on how awareness, access, early information, and trust shape participation in clinical research for lasting change.
Awareness And Access Gaps Continue To Limit Clinical Trial Participation
According to a national poll from the Patient Advocate Foundation, 75% of adults living with chronic illness are interested in learning more about clinical trials but don’t have the information they need to apply and participate.3
Conversations about clinical research aren’t consistently happening between healthcare providers and patients. Many individuals simply aren’t introduced to clinical research early enough to fully understand what participation involves or whether it may be an option for them. Research suggests these awareness and information gaps may be even greater among historically underrepresented populations.4
Access is also influenced by practical considerations such as transportation, care partner responsibilities, work schedules, and proximity to clinical trial sites. For others, perceptions of clinical research are centered around trust and may be shaped by previous healthcare experiences, uncertainty about the process, or questions about whether participation will feel relevant, respectful, and inclusive.
Improving representation requires addressing these factors together and creating more opportunities for people to learn about clinical research earlier — before they’re ever asked to consider participation.
Creating Earlier Entry Points For Conversation And Trust
Many individuals are first introduced to clinical trials when facing an important healthcare decision. By this point, there may be limited time to learn about the clinical research process, ask questions, or feel confident exploring participation as an option.
To help address this gap, Merck launched Let’s Talk Trials, an initiative designed to spark meaningful conversations, provide resources, and advance inclusive research to help build a future of healthcare that’s representative of all communities. The strategy is grounded in a simple belief: When people have access to clear, culturally relevant information, they’re better positioned to make informed decisions about their healthcare. Rather than focusing solely on participation, Let’s Talk Trials seeks to increase understanding of clinical research earlier for people, particularly those in underrepresented communities, through education, trusted partnerships, and community-based outreach.
Let’s Talk Trials is supported by a suite of educational resources designed to help individuals better understand what clinical trials are, how they work, and why they should represent the people most impacted by the disease. The educational resources include a fact sheet addressing common misconceptions about clinical trials, a brochure explaining clinical trials and the importance of representation, and an FAQ covering topics such as eligibility, participant rights, and how to initiate conversations about the clinical research process.
Community-based outreach designed to meet people where they are is another core component of the initiative. Through collaborations with advocacy organizations and community groups and leaders, Let’s Talk Trials creates opportunities for individuals to engage with information about clinical research and receive educational resources in environments where they already seek health information and support. These efforts come to life through participation in community events and conferences such as Dia de la Mujer Latina Health Fiesta, the Alpha Kappa Alpha Sorority, Incorporated North Atlantic Regional Conference, and other community-centered health and advocacy events. To help expand access to information about clinical trials, educational materials are also translated into Spanish and shared at events serving Spanish-speaking audiences.
We also partner with organizations, including Acclinate, to engage historically underrepresented communities through educational outreach and resource distribution, and Suvoda (formerly known as Greenphire), to help address practical barriers such as transportation support for participants traveling to clinical trial sites.
Importantly, these conversations are designed to be two-way. They’re not only intended to share information but also to create opportunities for listening and learning. Through conversations with patients, care partners, advocacy organizations, and community leaders, we gain valuable insight into the questions, concerns, and experiences that shape how people view clinical research. These insights help inform future engagement efforts and strengthen our ability to support communities in meaningful ways.
Advancing Representation Requires A Broad, Coordinated Approach
Efforts like Let’s Talk Trials are part of our broader, long-standing commitment to improving representation in clinical research. The initiative reflects a holistic approach that connects community engagement, trust-building, and real-world considerations across the clinical research process, rather than addressing these elements in isolation.
Increasing representation in clinical trials also requires continued focus on how clinical trials are designed and delivered. This includes more intentional approaches to site selection, incorporating patient and community perspectives earlier in the clinical trial design and planning process, and addressing practical barriers that may influence participation, including transportation, care partner responsibilities, scheduling concerns, and access to information.
Improving representation also requires a coordinated effort from the entire clinical research ecosystem. We must all work together to create more opportunities for engagement, build trust, and ensure individuals have the information they need to make informed decisions about clinical research. When individuals are informed, engaged, and empowered to explore clinical research as an option, participation becomes a more accessible consideration rather than an unfamiliar concept introduced at a critical moment.
Looking Ahead
By creating opportunities for individuals to explore clinical research with greater understanding and confidence, we can help create a future of healthcare that’s inclusive and representative of all communities.
References:
- Loree JM, Anand S, Dasari A, et al. Disparity of race reporting and representation in clinical trials leading to cancer drug approvals from 2008 to 2018. JAMA Oncology. 2019;5(10):e191870. doi: 10.1001/jamaoncol.2019.1870.
- Peters U, Turner B, Alvarez D, et al. Considerations for embedding inclusive research principles in the design and execution of clinical trials. Ther Innov Regul Sci. 2023;57(2):186-195. doi:10.1007/s43441-022-00464-3.
- Patient Advocate Foundation. National poll: Adults have high interest in clinical trials, but lack information. Last accessed: May 2026. Available at https://www.panfoundation.org/national-poll-adults-have-high-interest-in-clinical-trials-but-lack-information/.
- Hamel, L, Penner, L, et al. Barriers to clinical trial enrollment in racial and ethnic minority patients with cancer. Cancer Control. 2016;23(4):327–337. doi: 10.1177/107327481602300404.
About The Author:
Adrelia Cabiness Allen is the executive director of clinical trial patient representation at Merck Research Laboratories. In this role, Adrelia leads a team of experts focused on enrolling patients from underrepresented groups into clinical trials. The team engages with patients and clinical research communities to educate and raise awareness of the need to recruit people from all racial, ethnic, socioeconomic, cultural backgrounds, and lifestyles – which is essential to advancing knowledge about the safety and efficacy of treatments for all people. Adrelia has held positions of increasing responsibility within Merck’s clinical research organization. She holds a Doctor of Pharmacy degree from Florida A&M University. She is a registered pharmacist and a certified project management professional. Her team was recently awarded the top honor by Citeline for exceptional initiative in promoting diversity and inclusion of underrepresented populations within a clinical trial or drug development program. She is also a recipient of the Healthcare Businesswomen’s Association Rising Star award for her leading efforts to increase diversity of clinical trials.