t is essential that representative communities—including patients from medically underserved communities—participate in clinical research. Clinical trial data from diverse populations play a vital role in translating scientific advancements into better health outcomes for all the people who may benefit from a new therapy. However, clinical research literacy and levels of trust vary widely, in part because the general public and patients have limited exposure and access to clinical research, and they may consider it to be of limited relevance in relation to their health and the community where they affiliate and live.

With the goal of raising awareness within medically underserved communities about the importance of clinical research and diverse representation in clinical trials, the Center for Information and Study on Clinical Research Participation (CISCRP) visited urban community events with a mobile educational exhibit. This initiative is part of CISCRP’s ongoing, nearly two-decades-long clinical research awareness campaign called AWARE for All. This paper summarizes some of the learnings from our initial effort to bring clinical research education to underserved communities via mobile education delivered in the heart of urban areas.

Several months in advance of the mobile exhibit’s event dates, CISCRP partnered with six local community educators in Baltimore and Philadelphia with the goals of establishing lasting connections in underserved communities and increasing attendance at the mobile exhibit. Community educators were compensated for their time.

A recreational vehicle (RV) (Exhibit 1) was outfitted with an interactive educational exhibit about clinical research. In the fall of 2023, the mobile exhibit was brought to six major events in underserved communities, three in Baltimore and three in Philadelphia.

At each event, community educators and CISCRP staff welcomed people passing by and guided them through the exhibit and facilitated conversations afterward. Surveys were conducted before and after exhibit visits to evaluate the impact of the exhibit on visitors’ attitudes and behaviors regarding clinical research.

Exhibit 1. Journey to Better Health (JTBH) Mobile Exhibit: A mobile educational exhibit about clinical research.

The exhibit content was presented in an interactive fashion for maximum engagement, and the exhibit included robust accessibility features to engage visitors regardless of physical ability, language, literacy, and other factors. The exhibit included interactive posterboards, educational pamphlets and brochures, and other interactive elements with educational content. CISCRP staff and community educators guided visitors through the exhibit and were available if visitors had additional questions.

In order to provide visitors with background on reasons for underrepresentation and mistrust in clinical trials, exhibit materials discussed examples of past injustices and mistreatments of those who are Black or African American as well as those who are Puerto Rican, specifically historical events such as the Tuskegee Experiment, the mistreatment of Henrietta Lacks, and unethical contraceptive trials conducted in Puerto Rico.

The exhibit also discussed regulations and safeguards in the current clinical research landscape (e.g., an overview of how the safety and ethics of clinical trials are monitored by IRBs and the FDA), provided information about the importance of clinical research, and described ways to get involved. The information highlighted the importance of diverse representation in all aspects of the clinical research process, including on patient advisory boards and in clinical trials.

Assessing Impact

Three short surveys were developed to assess visitors’ attitudes toward clinical trials immediately before (Survey 1), immediately after (Survey 2), and one month after they visited the exhibit (Survey 3).

Respondent Characteristics

Of the 676 people who visited the JTBH mobile exhibit, more than half (n=355) completed both Surveys 1 and 2, while 103 of those visitors also completed Survey 3.

Almost half of those who disclosed their race and ethnicity (n=156, 49%) identified as Black/African American, 10% (n=31) identified as Asian, 17% (n=53) were of Hispanic or Latino ethnic origin, and 38% (n=122) identified as White. Over half of survey respondents were between 18 and 34 years of age (n=207, 58%) with a majority identifying as female (n=236, 68%). Note: Values may not add to 100% because not all respondents disclosed their demographic information, and respondents could select multiple values for some demographics questions.

The mobile exhibit positively impacted visitors’ general understanding of clinical research. Prior to experiencing the mobile exhibit (Survey 1), 37% (n=132) of respondents reported having a strong understanding of the terms “clinical research study” and “clinical trial,” while this number rose to 66% (n=233) immediately after visiting the mobile exhibit (Figure 1).

Figure 1. Self-reported levels of understanding of the terms “clinical research study” or “clinical trial” before (Survey 1) and after (Survey 2) viewing the Journey to Better Health mobile exhibit.

In terms of taking the next steps toward engaging with clinical research, four weeks after the JTBH exhibit, over half (52%) of Survey 3 respondents reported talking to family and friends about clinical research, and 21% indicated they had searched online for clinical trials (Figure 2).

Figure 2. Actions taken by respondents to engage in the clinical research process since visiting the Journey to Better Health mobile educational exhibit.

Survey results also showed that exposure to the exhibit positively impacted visitors’ levels of interest in learning more about clinical research (with 89% of visitors reporting that they were “Somewhat” or “Very Interested” in learning more after the exhibit), and levels of confidence in taking the next steps toward participation (with 40% feeling “Very confident” in taking the next step to learn more after viewing the exhibit).

When visitors were asked (in Survey 2) about their experience visiting the mobile exhibit, responses were overwhelmingly positive. The majority of participants (68%) reported their experience as “excellent” or “very good” (28%) (n=355).

Discussion

The results of the JTBH mobile exhibit impact surveys suggest that this novel, mobile model of educational outreach may be an effective method of raising awareness of, and boosting public engagement in, the clinical research process among medically underserved communities. Results also showed that this educational exhibit model may present a step in the right direction toward increasing awareness of the importance of representation in clinical research and may lay a foundation for long-term engagement in the clinical research process.

CISCRP will be bringing, and assessing the impact of, the mobile exhibit to rural underserved communities in late 2024 and into 2025.

Acknowledgements

We thank the community educators, volunteers, and CISCRP staff whose hard work and dedication made this project possible.