Starting in 2020, the COVID-19 pandemic swept the world, causing over 1 million deaths in the United States alone, with the highest death rates and excess deaths occurring among Black or African American, Latino/Hispanic, and American Indian or Alaska Native populations. The National Institutes of Health (NIH) recognized the disproportionate impact the COVID-19 pandemic was having on underserved and vulnerable populations who had significant barriers to health care access and lived in conditions that made self-isolation or working from home impossible. In response to this global public health emergency, NIH leadership allocated $500 million of the emergency supplemental appropriation to addressing the stark disparities in cases, hospitalizations, and deaths evident in the first months of the pandemic.
We were charged with cochairing the Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) initiative and leading staff in developing plans for a national consortium of community-engaged programs; the goal was to support research into evidence-based COVID-19 testing and interventions that would decrease these health disparities. Through the extraordinary and collaborative effort of staff across the NIH, the agency released its first funding opportunities for RADx-UP in June 2020.
The program has established a nationwide network of over 125 community-engaged implementation science research projects that leverages and expands upon established relationships between NIH-funded scientists and community leaders. A specific subset of projects focuses on the social, ethical, and behavioral implications associated with testing, data collection, and data sharing. A Coordination and Data Collection Center (CDCC) provides overall leadership as well as project and resource management, and supports data collection, harmonization, integration, and transfers in close coordination with NIH staff.
The scientists leading these projects have worked with community partners for years and were positioned to address the disparities through a community-engaged approach founded on mutual trust. Although community-engaged research is by no means a new approach for NIH studies, the scope and size of this program reflected a transformative commitment and recognition that we could not continue with “business as usual.” This effort has required an unprecedented level of communication, collaboration, and coordination among hundreds of NIH staff, the CDCC, and the funded scientists. In 2020, all answered the call, recognizing that the urgency of the pandemic and the striking and persistent disparities necessitated rapid action appropriate for a given community.
Now, approximately two years since RADx-UP held the kickoff meeting for its first awardees in November 2020, this AJPH supplement presents findings from the RADx-UP program. The articles included herein cover an impressive array of research in a variety of populations and settings that we anticipate will provide helpful, context-specific data relevant to underserved and COVID-19–vulnerable communities across the nation. Over a short time, this unprecedented collaboration has provided two durable lessons. First, community engagement is not only a legitimate research method but an essential one to address population health. The foundation is built on sustainable trusting relationships between scientists and community leaders, with support from the NIH.
Second, leveraging the effort of 127 projects and the tens of thousands of consenting individuals must lead to scientific synergy. In that spirit, we have required use of common measures for demographics, social determinants, selected behaviors, and COVID-related variables linked to data sharing across the consortium. It is our expectation that these efforts will lead to advancing knowledge in addressing health disparities from COVID-19 and other causes for years to come. NIH leadership aims to learn from and utilize the framework developed with this initiative to set a precedent for an inclusive and community-engaged scientific method that relies on local partnerships, trusted leaders, and invested participants to make a change in public health responses.
Eliseo J. Pérez-Stable, MD
National Institute on Minority Health and Health Disparities
National Institutes of Health
Richard J. Hodes, MD
National Institute on Aging
National Institutes of Health
Tara A. Schwetz, PhD
Office of the Director
National Institutes of Health
1. Year Ago
Best Practices for Conducting Clinical Trials With Indigenous Children in the United States
Community engagement is arguably the most important practice of doing research with Indigenous populations. Various models of community-engaged research exist, including community-based participatory research, participatory action research, and community engaged research. . . . The different models of community engagement all conceptualize research as an equitable, collaborative process between researchers and communities. Equitable research requires that all partners understand the importance of having a shared interest and emphasizes the development of meaningful, sustained relationships built on mutual trust and respect among all partners, by their own standards. Such partnerships center the unique and critical expertise of community partners, who are involved in some capacity in all aspects of the research.
From AJPH, September 2021, p. 1647
7. Years Ago
Enhancing Stewardship of Community-Engaged Research Through Governance
Researchers working with native communities. . ., other racial/ethnic minority communities, or other communities facing disparities that experience similar mistrust for past research issues, health inequities . . ., or both, have advocated the use of participatory research to enhance community health. Such approaches include tribal participatory research, community-based participatory research, and participatory action research and are generally grouped as community-engaged research (CEnR). . . . CEnR that involves collaborative partnership and shared leadership between community members and (academic) researchers in all phases of the research can build capacity of all partners, create research that benefits the community, and enhance translation of research findings to the community. These approaches have attraction because they can advance cocreation of the research, contribute culturally centered methods, and foster research capacity.
From AJPH, June 2015, p. 1161
Biography
