A bedrock principle at NCATS is that translation is complete only when interventions reach and benefit all the individuals and communities that need them. This critical step of the translational process, referred to as Dissemination and Implementation (D&I), often is stalled by a lack of inclusion in clinical trials, hindering the development of effective new interventions and preventing existing ones from reaching the people for whom they were created.
These challenges in translation are nowhere more starkly evident than in the wide racial and ethnic disparities in health outcomes and inclusion in clinical studies that have come to the forefront in our country these past few months. For many reasons, including existing social constructs, racial and ethnic minorities in the United States face a disproportionate burden of many health conditions — including heart disease, diabetes and asthma — yet they are underrepresented in the research and medical practices conducted for such conditions.
In the current COVID-19 pandemic, minority groups, including African Americans and Hispanics, are suffering disproportionately high infection and death rates, making inclusion of participants from these groups in studies of potential treatments and vaccines especially crucial. There are ongoing efforts to increase the participation of individuals from underrepresented groups; as a result, more and more clinical studies include people from different backgrounds. However, health disparities have been exacerbated by the historical underrepresentation.
To first and foremost ensure that health disparities are addressed and to increase the effectiveness of the critical D&I step in translation, NCATS has prioritized innovative thinking and approaches to these problems since our founding. For example, the CTSA Program hubs have community engagement programs that have built trusting relationships with minority and underserved communities through inclusion in research design, clinical studies and the benefits of research. The CTSA Program Trial Innovation Network’s Recruitment Innovation Center collaborates with the hubs to design and implement effective interventions to increase representation of underserved groups in clinical trials. These efforts have been remarkably successful and demonstrate innovative approaches to address these long-standing inequities, but they require resources and a different way of thinking and acting than the biomedical research model traditionally has supported. We are expanding these efforts to address the immediate issues of COVID-19 and hope that a “silver lining” of this pandemic will be a permanently greater focus on inclusion and bringing the benefits of research to minorities and other underserved populations for a healthier America for all.
Christopher P. Austin, M.D.
National Center for Advancing Translational Sciences