Karriem S. Watson, DHSc, on Early Engagement in Clinical Trials for Underrepresented Communities

It is been my pleasure to discuss the importance of diversity in clinical trials. As a cancer disparities researcher and as well as Chief Engagement Officer for the NIH All of Us Research Program, I've seen firsthand what intentional community engagement can do to improve cancer outcomes. I've seen the impact of community-based participatory research as an evidence-based tool to support reaching populations that have been historically underrepresented in biomedical research. We think about populations that carry some of the greatest burden of cancer, such as African-American men. In my research, I've been able to engage African-American men as citizen scientists by working with barbershops, by working with faith leaders as well as members of fraternities and other civic organizations to ensure that we engage members from the community, members that carry the same burden of disease that we see in the populations, that we want to do outreach to engage those partners as equal participants and equal partners in our work. And it's been through trusted relationship building that we've been able to address and mitigate some of the historical misgivings that have happened, such as when you think about things and studies like those that happened to Henrietta Lacks, when you think about the United States Public Health Service study of syphilis in Tuskegee, Alabama, you think about the historical medical mistrust that has happened. As a result of some of that historical medical mistrust it's important for us to build honest and transparent relationships with people. And through the NIH All of Us Research Program , it's been through these trusted relationships through an engagement ecosystem of over 135 national and local partners that we've been able to build partnerships to address trust, to address transparency, to address things like how do we return value in research, and it's through those trusted partners that we'll be able to advance health disparities research. Additionally, in my work, I've also looked at some of the ways that we can culturally tailor our educational tools. When you think about a lot of the resources that we have to address cancer disparities, a lot of those resources were not made by, for, nor with populations that carry the greatest burden of disease. In my work, I've found that including the community in both the design, the implementation, as well as dissemination of the research will improve the reach as well as help us to get to mitigating many of those cancer disparities. In the All of Us research program, we've seen firsthand that including community members as partners through intentional community engagement can actually increase the representation of diverse populations in research. We actually have unprecedented numbers of diversity equity inclusion with over 46% of our participants who self-identify as racial and ethnic minorities. And over 80% of our participants are from an underrepresented group in biomedical research. All that has been achieved through direct community engagement.