The National Institutes of Health (NIH) announced it will pump $29 million in additional grants for the NIH Community Engagement Alliance (CEAL) targeting COVID-19 disparities in a bid to bolster research to help communities disproportionately impacted by the pandemic. Made possible by the American Rescue Plan, $15 million goes to 11 teams already conducting research and outreach to help strengthen COVID-19 vaccine confidence and access, not to mention testing and treatment in those communities that are underserved and traditionally more difficult to reach, such as African American, Hispanic/Latinx and Native Americans. Another $14 million funds new research in an effort to extend the reach of COVID-19 community-engaged research and outreach.
TrialSite provides a brief breakdown of this important NIH announcement.
What is the goal of this effort?
Gary H. Gibbons, director of the National Heart, Lung, and Blood Institute (NHLBI), part of the NIH, shared in the press entry: “The goal of this effort is to foster community-engagement research in communities which have been hit hardest by the pandemic.” He continued, “The alliance is designed to meet people where they are with the help of trusted messengers, including family doctors, pastors, and community health workers, and to forge lasting partnerships to address health disparities.”
How are the Funds Allocated?
Eleven research teams received $17 million in grants in 2020 to reach residents at risk of severe COVID-19 outcomes. Spread throughout the country, CEAL research groups have used different strategies to coordinate educational outreach, raise awareness about the importance of inclusive participation in COVID-19 testing, vaccine uptake, and clinical trials, and conduct research to understand barriers surrounding prevention and treatment. CEAL researchers also study the best ways to address these challenges and establish trust in the scientific process, while equitably distributing COVID-19 resources tailored to each community.
The Social & Cultural Just as Important as the Science?
That’s right. For too long, government-based messaging and education centered on scientific jargon that, although accurate, couldn’t translate to various constituencies. Of course, with historical, residual racism still present in health systems, health education and advocacy must be authentic, communicated via trusted sources. This fits into TrialSite’s mission of transparency and accessibility, breaking down and tracking research in such a way that ever more people interested in the topic can follow.
Eliseo J Perez-Stable, MD, directs the National Institute on Minority Health and Health Disparities (NIMHD) and went on the record about the latest news: “It’s one thing to have strong national messages about the science behind vaccines.” He continued, “It’s another to have those messages delivered by local, trusted sources, who can ensure questions from their communities are honestly and clearly addressed.”
What are Some Examples?
For example, mobile units in the Mississippi Delta helped rural residents access COVID-19 vaccines, while pop-up vaccine clinics played similar roles in California, Michigan, and other states. Focus groups in multiple CEAL regions identified information-based needs and perceptions about vaccines and treatment, including concerns about medical mistrust, which guided future outreach.
“The most promising scientific discoveries benefit all populations and the way we ensure that is through inclusive research participation and community engagement,” Pérez-Stable added. “CEAL researchers are creating the community-engaged model to transform research practice.”
Throughout 2021, CEAL researchers will tap into community leaders, trusted organizations, and experts familiar to their communities, including NIH Rapid Acceleration of Diagnostics (RADx) testing centers, state health departments, certified diabetes educators, and community health workers. These community assets will partner with each other to strengthen a national response to COVID-19 by focusing on local outreach. As teams within the CEAL Alliance personalize these outreach strategies, they will also share their findings with each other and the broader community of those working to move the country past the pandemic.
“The power of community-engaged partnerships extends beyond state borders,” said Catherine Stoney, Ph.D., the CEAL Alliance scientific program lead and deputy director of the Center for Translation Research and Implementation Science at NHLBI. “The CEAL Alliance provides a central research hub where findings from one region may inform or guide best practices in another.”
CEAL, guided by community-engaged researchers and supported by trusted community organizations and messengers, is an NIH-wide effort co-led by NHLBI and NIMHD.
What about Informed Consent?
TrialSite applauds the work of NIH generally to reach underserved, vulnerable communities. In fact, TrialSite is currently shooting a documentary film set in Los Angeles about various communities of color and the impact of the pandemic, perceptions of the health systems in the nation’s second largest city, and the drive to vaccinate. What’s working as far as community outreach and what’s not?
TrialSite notes the informed consent process represents perhaps the most important step in research—again, the vaccine is still under emergency use authorization (EUA). A recent study published in JAMA by two University of Pennsylvania researchers titled “Assessment of Length and Readability of Informed Consent Documents for COVID-19 Vaccine Trials” revealed that for the general population, it appears that informed consent failed to clearly, concisely explain the studies to participants at the general level. In impoverished and working class communities of color, the levels of education may be even less hence an informed consent in the form of “legal tome” isn’t acceptable, and must be rectified.
10 New Research Teams
The 10 new research teams joining the CEAL Alliance include:
∙ Jose Arturo Bauermeister, Ph.D., M.P.H., University of Pennsylvania, Philadelphia
∙ Cheryl Himmelfarb, Ph.D., R.N., Johns Hopkins University, Baltimore
∙ Matthew Kreuter, Ph.D., M.P.H., Washington University in St. Louis
∙ Benjamin Linas, M.D., Boston Medical Center
∙ Vivian Colón-López, Ph.D., M.P.H., University of Puerto Rico Medical Sciences, San Juan
∙ Molly Martin, M.D., University of Illinois at Chicago
∙ Pearl McElfish, Ph.D., University of Arkansas for Medical Sciences, Little Rock
∙ Donald Nease, M.D., University of Colorado Denver
∙ Chau Trinh-Shevrin, DrPH, New York University School of Medicine, New York City
∙ Lisa Cacari Stone, Ph.D., University of New Mexico, Albuquerque
The National Institute of Minority Health and Health Disparities
The National Institute of Minority Health and Health Disparities (NIMHH) invests in research and fosters collaborations and partnerships to promote and support evidence-based science to inform practice and policy. Its programs and initiatives provide a leading edge in enhancing the scientific knowledge base and designing interventions to improve health outcomes to reduce and ultimately lead to the elimination of health disparities.
Through NIMHD’s leadership, health disparities have become a recognized scientific field of study, which has evolved from documenting and investigating differences in health status and risk factors among affected populations, to addressing health disparities using traditional and non-traditional research approaches.
Call to Action: For more information about the CEAL Alliance, visit the NIH COVID-19 communities page. Note, TrialSite is filming a documentary now in Los Angeles on the impact of COVID-19 in communities of color, as well as the efforts to vaccinate these, what in many cases, are hard to reach groups.