Community Engagement Alliance (CEAL): Leveraging the Power of Communities During Public Health Emergencies

Meaningful community engagement is an essential component of efforts to address public health emergencies. The COVID-19 pandemic demonstrated the crucial role that such engagement plays in building trust, sharing science-based knowledge, cocreating interventions with communities hardest hit by the pandemic, and supporting tailored community mitigation and prevention strategies. The collection of articles in this issue of AJPH reflects work undertaken by research teams and their community partners in the National Institutes of Health (NIH) Community Engagement Alliance (CEAL) Against COVID-19 Disparities. The works include editorials, research articles, and analytic essays as well as more than a dozen Notes from the Field articles, which provide invaluable insights.

Collectively, the articles address important themes, such as listening to and learning from communities, building and maintaining public trust in science and clinical research, paying attention to social and environmental determinants of health, and elevating the voice of underserved and underrepresented racial and ethnic minority communities. The articles also highlight the importance of meaningful community engagement in addressing the root causes of health disparities as we chart a future for more inclusive, equitable, and thriving communities.

THE IMPORTANCE OF COMMUNITY ENGAGEMENT

During public health emergencies, the urgent search for scientific breakthroughs to deliver safe and effective clinical and public health interventions takes highest priority. The COVID-19 pandemic demonstrated the crucial role and power of communities during such emergencies and taught us that meaningful engagement of the communities disproportionately affected by the public health emergency should be similarly prioritized. The pandemic also showed the importance of equitable participation in COVID-19 testing and ultimate uptake and implementation of scientifically established interventions that demand meaningful community engagement. The NIH established CEAL (Mensah et al., https://bit.ly/3tWRzx0) in the early phase of the pandemic to help address the pronounced racial and ethnic disparities seen in COVID-19 infections, hospitalizations, and deaths in the United States.¹

The core mission of the CEAL program was to foster health equity in the communities hardest hit by the COVID-19 pandemic. The backbone of the program comprises 21 regional research teams geographically dispersed across the United States, including Puerto Rico and the District of Columbia (Mensah et al.). The major activities undertaken by the CEAL program in the early phases of the pandemic included engaging communities to grow public trust in social, behavioral, and biomedical sciences; promoting diverse and inclusive participation in clinical research on the prevention and treatment of COVID-19; identifying strategies for monitoring and countering inaccurate information; addressing vaccination hesitancy and vaccine acceptance; and engaging and valuing communities as core components of the CEAL research ecosystem.

The CEAL program was fortunate to attract outstanding community-engaged research investigators, including behavioral and clinical scientists with established track records of involvement in the communities hardest hit by the pandemic. The program also attracted dedicated community health workers, trusted community members, and myriad community partners, including grassroots community-based organizations, as well as state and local health department leadership and staff. All partners proved vital in the development of strategies to support COVID-19 testing and community mitigation strategies and in using multichannel communications to address inaccurate information about COVID-19 infections, vaccinations, hospitalizations, and susceptibility to severe disease and death.

THE ARTICLES IN THIS ISSUE OF AJPH

In this issue of AJPH, we present three editorials that highlight (1) important lessons learned, including the value of listening to communities and using the feedback to inform strategies to optimize diverse and inclusive participation in clinical research (Craig et al., https://bit.ly/3QuIV0m); (2) new models of harm mitigation through the engagement of vulnerable communities in three Southern states (Compretta et al., https://bit.ly/3tUfcpZ); and (3) the crucial role of community engagement consultative services that promote diverse and inclusive participation in clinical research (Ilias et al., https://bit.ly/3FKjtzd).

We also share five research articles and analytic essays that address experiences in COVID-19 surveillance and contact tracing in Puerto Rico (Lopez et al., https://bit.ly/3QNcVGk), trust and risk perception in CEAL communities (Marino et al., https://bit.ly/40omP4h), temporal trends in vaccination-specific willingness after serious adverse event reports (Parthasarathy et al., https://bit.ly/3tWsuCm), elements of community data accessibility on social determinants of health (Morey et al., https://bit.ly/47kwBqp), and initial findings of one evaluation exercise using publicly available data from the Centers for Disease Control and Prevention (Price et al., https://bit.ly/47kmFgv).

We also share key insights from more than a dozen Notes from the Field articles submitted in response to the call for articles. Among these were several examples about trust, strategic partnerships, and the importance of social and environmental determinants of health. Building and maintaining public trust in science and clinical research is a major priority at the NIH.² It was therefore reassuring to see the importance of trust, trustworthiness, and transparency in community-engaged research addressed in the CEAL program overview (Mensah et al.) and in two Notes from the Field articles—one on participatory trust-building in vaccination research in American Indian, African American, and Hispanic/Latino communities (Cacari Stone et al., https://bit.ly/3QJMAsD) and the other on building trust and promoting awareness of COVID-19 vaccination research in communities of color (Miller et al., https://bit.ly/40Hbm01).

Another crucial concept addressed is the importance of strategic partnerships, including community–academic–public health models (Krousel-Wood et al., https://bit.ly/3Tau0LP); partnerships with municipal health agencies that bring services to communities, such as through the deployment of mobile vans in COVID-19 vaccination (Larson et al., https://bit.ly/40qYo6a); and partnerships with community health workers (Espinosa et al., https://bit.ly/3QWkQRP). Other articles shared insights on a wide variety of issues of importance to the prevention, treatment, and control of COVID-19. These included innovative approaches that promote vaccination (Carrier et al., https://bit.ly/3scfp7K; Brewer et al., https://bit.ly/49lPniX; and Kreuter et al., https://bit.ly/3QqhQeM); elevate the voice, visibility, and inclusive participation of American Indian and Alaska Native, Asian American, Native Hawaiian, and Pacific Islander populations (Zhang et al., https://bit.ly/47fWtnc); and build capacity for sustained health promotion and health equity (Nawaz et al., https://bit.ly/3FJCIc6; Jones et al., https://bit.ly/3QLjjO5; Skinner et al., https://bit.ly/3SsdNRI; and Villagomez et al., https://bit.ly/3SuXaVE).

THE COMMUNITY ENGAGEMENT ALLIANCE’S FUTURE

The expiration of the US COVID-19 public health emergency declaration on May 11, 2023³ ushered in a new period of taking stock of lessons learned during the emergency and charting a future that ensures community preparedness to address future health threats. It also highlighted the continued need to address the root causes of the racial/ethnic and socioeconomic disparities that existed before the pandemic and were made highly visible during the pandemic. These root causes account for the huge—and often widening—racial/ethnic, socioeconomic, urban–rural, and education-related disparities we see in heart disease, chronic lung diseases, diabetes, cancer, and other chronic diseases and their major upstream risk factors, including social and environmental determinants of health. Most importantly, the current postpandemic era calls on us to use lessons learned from the meaningful engagement of communities in all aspects of health research so that we eliminate disparities and promote thriving communities.

The NIH remains committed to concerted efforts to build out the CEAL ecosystem’s footprint and chart a future vision in strategic alliance with our partners in communities, academia, and state and local health departments. These efforts include supporting meaningful community engagement as envisioned in the National Academy of Medicine’s conceptual model for achieving health equity and systems transformation. This model puts community engagement and core engagement principles at the center of change (Figure 1).⁴

FIGURE 1—

The National Academy of Medicine’s Conceptual Model for Achieving Health Equity and Systems Transformation Through Meaningful Community Engagement

Source. Reproduced with permission from the National Academy of Medicine.⁴

The future vision of CEAL also includes moving beyond the acute manifestations of COVID-19 to focus on the prevention and control of the root causes of health disparities in chronic diseases and their major upstream preventable risks, including the social and environmental determinants of health. This research portfolio will also include attention to maternal morbidity and mortality and related health disparities, differential environmental exposures, and the impact of climate on health and health disparities.

The future activities of CEAL also call for continuing attention to racial/ethnic minority groups, especially groups that are often invisible in our national health disparities data and research (Zhang et al.) and population groups disproportionately affected by diseases and risks. Capturing common data elements for social determinants of health in existing data sets and related geospatial data in disproportionately affected communities will be invaluable for informing rigorous community-engaged research that advances health equity in CEAL catchment areas. Promoting links between community-engaged research and local-level access to clinical preventive services and primary care will be essential, and it should happen through strategic partnerships with centers of care, including federally qualified health centers and community health centers.

Racial/ethnic disparities in health and related social and environmental health inequities have existed for far too long in the United States—and with little evidence of progress to reduce them despite well-intended plans.⁵ A key finding from the CEAL program is that meaningful engagement of empowered communities built on trust, truthfulness, transparency, and mutual respect is essential to progress in reducing health disparities. In Louisiana, CEAL efforts led to the elimination of Black–White COVID-19–associated disparities (McClure et al., https://bit.ly/3FOrXoS). This is a shining example of what is possible as we chart a future together that focuses on promoting health and eliminating disparities so that communities can thrive.

We thank our myriad community-based organizations, other community partners, state and local health department partners, academic health center awardees, and community-engaged research investigators who responded to the CEAL research opportunity announcements as well as the AJPH call for articles for this special journal issue. We also thank the Centers for Disease Control and Prevention, our other sister federal agencies, the numerous NIH subject matter experts, and our support staff from Deloitte and Westat. Most importantly, we thank community members and their families and friends who continue to participate in clinical research that makes health discovery possible. We will continue to heed the exhortation they gave us at the start of the CEAL effort—always move at the speed of trust!