Written by Behtash Bahador | bbahador@ciscrp.org
You may have heard that the people who take part in clinical trials are not as diverse as the people who might use the treatments or vaccines being studied in trials. We see a lack of diversity in age, sex, gender, race, and ethnicity when it comes to clinical trials. When certain groups are not well-represented in trials, it could mean researchers cannot learn enough about how well treatments or vaccines will work for them.
Among the groups who have not been well-represented in clinical trials for many years are African Americans and Black people, Hispanic Latinos and Spanish people, and other people of color. The events of 2020 have raised the public’s awareness of social inequality and health gaps among these populations. There is also increased interest among the public about the role of clinical research in developing treatments or vaccines.
At CISCRP, our mission has always included giving all patients and members of the public access to clear and unbiased educational information about clinical research and the results of trials. We also help researchers ensure there are fair opportunities to participate in clinical trials. As the clinical research community increases their efforts to remove some of these barriers that prevent equal representation in clinical trials, our staff continues to respond with a deep sense of urgency and commitment to do our part.
“Nothing about us without us”: the role of community engagement and education
Like most public health challenges, making sure there is equal representation in trials requires changing several parts of a complex system. CISCRP supports making this change in 2 important ways:
1) Engaging and working together with the communities who are not well-represented to understand the barriers they face, and
2) Applying what we learn to help remove those barriers, including developing educational materials with the input of those communities to make sure we are effectively connecting with them and empowering them.
Some work has already been done to identify the barriers that prevent these communities from participating in clinical trials. The graphic below shows some these barriers. It was created based on what CISCRP has learned through working directly with members of the communities who are not well-represented in trials.
But, the barriers each community faces are not the same. While some of these barriers can be removed with broad brush strokes that help everyone, there is no one-size-fits-all solution. This is why it is important to work closely with each community and make sure their perspectives and feedback are applied when creating and completing projects or programs aimed at removing these barriers.
What CISCRP is doing
To carry out our mission, CISCRP is continuing to take on projects that support improving diversity and inclusivity in clinical research.
Our Health Communication Services team is focusing on developing educational materials that engage and inform the communities that have not been well represented in clinical trials. By seeking feedback from the community while we create these materials, we strive to make sure everything we develop is easy-to-understand, unbiased, and culturally appropriate.
Our Research Services team continues their work to make sure we gain perspectives and insights from underserved communities through focus-groups, interviews, surveys, and user-testing. Our projects center on working directly with individuals who represent the diversity that we hope to achieve in clinical trials. This includes different age groups, different sexes and genders, and diverse races and ethnicities.
Finally, our Community Engagement and Media Awareness teams have the important role of reaching the communities who have not been well represented in clinical trials and connecting them to educational resources. We also connect them to researchers and patients who have taken part in clinical trials before. Through our Webinars, Media Campaigns, and exciting Events, we are making sure the right people are having conversations about the lack of diversity in clinical research.
