Community Engagement in the COVID era is the CTSA version of All Hands-on Deck

As the COVID-19 pandemic continues to rampage across the globe and now some nations previously lauded for their infection control practice are seeing a resurgence, along with emerging science suggesting not only a very low infectious dose, but also efficient asymptomatic transmission, the focus on COVID interventions both treatment and prevention is heating up.

Across the United States, several large-scale vaccines trials as well as multiple inpatient and outpatient treatment trials are beginning to enroll. At the same time, other emerging data has painfully demonstrated limitations in our ability to diagnose COVID and NIH has embarked on an ambitious design to test novel devices as well as strategies to identify COVID-19 cases more rapidly. More recently, published evidence has called into questions our traditional concept of immunity (typically based on neutralizing antibody titers) which will further complicate our ability to assess the future public health impact of both vaccines and recovered cases.

While health disparities predate COVID, the current pandemic has exacerbated and amplified these disparities. At the same time, several polls have revealed a large fraction of the overall population expressing vaccine hesitancy which does not bode well for implementation and impact of any vaccine candidates that successfully display safety and efficacy. As such, in order to both achieve speedy analysis of COVID countermeasures and ensure representative assessment for all populations, community engagement is paramount. Community engagement is fundamental for translating our science into improvements in health outcomes such that  all stakeholders are respected, valued and rewarded for their time and expertise.

The CTSA Collaboration and Engagement Enterprise Committee (CE EC) connects experts in community engagement, collaboration and team science. One of CE EC’s main goals is to capitalize on successful local approaches for engaging community partners in research and to bring those approaches to a national level. Many CTSA Program hubs’ community engagement programs have successfully built trusting relationships with underserved communities through inclusion in research design, clinical studies and the benefits of research.

As one example, the CTSA Program Trial Innovation Network’s,  Recruitment Innovation Center (RIC) is focused on positively impacting human health by improving participant enrollment and retention in multi-center clinical trials. The RIC hopes to make this impact by accelerating evidence-based recruitment and retention strategies for diverse populations to improve health outcomes. An important part of their work is focused on how they can better support researchers to recruit and retain individuals from underrepresented groups in research. The RIC works with researchers to implement various recruitment and retention strategies such as community engagement studios, recruitment planning and feasibility assessment, recruitment materials and EHR-based cohort assessment.

In a recent NIH COVID-19 Community Engagement Forum in which several CTSA community engagement core leads and others participated, Dr. Consuelo Wilkins Co-PI of the Vanderbilt RIC highlighted that “engagement must be bi-directional and requires understanding and respect of the beliefs and values of the communities”. Another key point is communication needs to be consistent and evidence based and disseminated from a trusted local leader or community member, considering language barriers and cultural differences. Dr. Sergio Aguilar-Gaxiola from the UC-Davis Clinical and Translational Science Center mentioned an important area to also consider is the long-term impacts of COVID. “There is the immediate risk of getting ill and being critically ill, but it will be important to consider the potential long-lasting impacts of COVID on physical and psychological wellbeing that will likely have disproportionate impact on specific communities”.  This forum resulted in the development of the website Communication Resources for COVID-19 Vaccine Research, that includes resources for use in talking to communities about COVID-19.

The Community Engagement EC has followed up on the CE Forum discussion with a listen & learn session that provided an opportunity to CTSA community partners to share their desires, frustrations and lessons learned from collaborations with researchers. Encouraged by numerous requests, this dialogue will continue. Currently, investigators from the TIN are engaged and having an ongoing dialogue with Navajo and Apache communities to enable access to outpatient convalescent plasma studies by adding additional research sites to help treat American Indian patients with COVID-19.

As with our National COVID Cohort Collaborative (N3C) efforts, we are looking to CTSA Program Hubs and their partners to help us engage with multiple communities in a more meaningful and equitable way in fighting the COVID-19 pandemic. Our NCATS Director, Dr. Chris Austin, has also highlighted the importance of engaging communities in the translational process and some of NCATS’ efforts to address and decrease health disparities that disproportionately affect minority, rural and other underserved populations (See Director’s Corner, July 31: Translation for All).

Ultimately, our goal is to facilitate an effective, equitable and engaging implementation of highly promising strategies in the prevention, diagnosis and treatment of COVID-19 while we continue growing and strengthening sustainable, long-term and effective relationships with our communities locally, regionally and nationally.