Introduction
Health emergencies elevate the need for community-engaged research but pose unique implementation challenges. Meaningfully engaging communities in the design, implementation, and dissemination of research is crucial to ensuring that research is relevant and addresses the priorities of impacted communities [Reference McDavitt, Bogart and Mutchler1,2]. However, during a health crisis like the COVID-19 pandemic, community engagement efforts may be compromised by public mistrust, lack of information, misinformation, physical and social distancing measures, and insufficient time to cultivate and nurture bidirectional partnerships [Reference Han, Xu and Mendez3–6]. As such, there is a need to develop and disseminate adaptive approaches that facilitate timely engagement and knowledge transfer between community and academic research partners and that yield relevant, community-informed data to address prevailing barriers to public health efforts.
In response to the COVID-19 pandemic, the National Institutes of Health (NIH) launched the Rapid Acceleration of Diagnostics–Underserved Populations (RADx-UP) initiative to ensure all Americans have access to COVID-19 testing, with a focus on underserved communities most affected by the pandemic [Reference Corbie, D’Agostino and Knox7]. As part of this initiative, the RADx-UP Coordination and Data Collection Center (CDCC) supported 137 nationwide research projects in their work to address COVID-19 and increase accessibility to in-home and PCR testing (23% and 38% of projects, respectively). Communities most frequently served by projects included Hispanic/Latinx, African American/Black, older adult, and Asian American (63%, 58%, 25%, and 22% of projects, respectively). Each project required partnership between academic researchers and community partners. Community partners included individuals and organizations (e.g., public health agencies, faith-based groups, nonprofits, and service organizations) representative of a project’s local community that worked alongside academic researchers to guide project design, implementation, and dissemination.
Furthermore, the RADx-UP COVID-19 Equity Evidence Academy (EA) team, within the CDCC, led the development and implementation of a virtual conference series during which project teams shared and disseminated COVID-19 related information. The EA series provided a forum for convening community and academic partners during a public health emergency to engage in collaborative idea generation and consensus building [Reference Corbie, D’Agostino and Knox7,8]. The attendees shared their experiences, ideas, and recommendations for overcoming disparities in COVID-19 testing; these recommendations were disseminated to inform future research and action related to COVID-19. This model, and the findings generated, has broad utility beyond RADx-UP and can be used by others to inform and advance community-engaged research and practice.
Conference overview
EAs were held in 2021 (n = 2), 2022 (n = 1), and 2023 (n = 1) and cumulatively gathered over 1,000 attendees (see Table 1 for attendee characteristics). Invitations were emailed to RADx-UP projects, encouraging attendance from at least one academic and one community partner project representative, and to other RADx-UP interest-holders, including CDCC staff and NIH leadership. Invitations were also shared via the RADx-UP newsletter, website, and monthly project meeting.
Table 1. Attendee characteristics across all evidence academies (EAs)
*CDCC staff included the EA planning and implementation team; Other RADx-UP Partners included members of the NIH.
Via ongoing engagement of a steering committee (12–16 community and academic experts), RADx-UP academic and community project partners, and CDCC and NIH leadership, key interest-holders provided input on the design, implementation, and dissemination of each EA. Their input was leveraged to ensure that each EA addressed the needs and elevated the assets of communities most impacted by the pandemic [Reference Carter-Edwards, Leverty and Bilheimer9]. Notably, each EA focused on a theme that reflected issues critical to the community and evolving COVID-19 landscape (see “Conference Summaries and Recommendations” below). These themes drove discussion topics for each EA, where attendees engaged in interactive forums to encourage knowledge transfer.
The methods used to facilitate these forums included roundtable discussions (EA1–EA3) and consensus-building workshops (CBWs; EA4), described below. All discussions included participation from academic researchers, community partners, CDCC staff, and/or NIH representatives. Importantly, facilitators were trained in strategies for creating an inclusive virtual environment in which community perspectives were supported and prioritized (e.g., starting with opportunities to bring each voice into the room, encouraging cameras to be on, monitoring the chat in real time, and leveraging interactive collaboration platforms such as Google Slides with sticky notes for capturing participant input). Each conversation facilitated collaborative identification of recommendations to drive sustainable changes related to COVID-19 testing equity. These recommendations were reviewed and approved by discussion attendees in real time and shared with the broader EA audience prior to the events’ conclusion. After each EA, attendees were invited to provide additional written or verbal feedback. Once finalized, recommendations were emailed to EA registrants, posted on the RADx-UP website, and shared via presentations with RADx-UP project teams. Furthermore, the EA team developed summary reports for each EA that shared these recommendations, as well as summations of other conference content [Reference Carter-Edwards, Leverty and Bilheimer9]. These reports were developed using an interactive, lay-language format, were reviewed by community partners to ensure relevance and readability, and were disseminated via the channels described above. The recommendations from each EA are summarized below in the “Conference Summaries and Recommendations” section.
Roundtable discussions
Roundtable discussions are a form of structured conversation that ensures equal participation, encouraging attendees to contribute their thoughts and experiences about a topic while fostering collaboration [Reference Bridgeman10]. Used during EA1– EA3, these discussions created space for participants to understand and synthesize preconference readings and learnings from conference events, and to craft recommendations for action [11–13]. Attendees chose or were assigned to participate in discussion groups comprising 20–30 participants and focused on one of the event’s subthemes. Trained facilitators led the discussions, which generated topical recommendations for improving COVID-19-related strategies and policies (see EA1–EA3 summaries below).
Consensus-building workshop
The CBW framework used in EA4 was developed by the Institute of Cultural Affairs International and is based on their “Technology of Participation (ToP)”- an integrated set of facilitation methods and tools that enable full group participation to build consensus about a complex topic [14]. During EA4, attendees were invited to participate in a CBW during the event’s second day. Workshop attendees were divided into breakout rooms, and the ToP methodology was used to elicit answers to the question “Based on your experience, the action steps we can take to share and apply the community engagement strategies from RADx-UP to advance health equity research and practice are …?” Attendees were then collapsed into larger discussion rooms to cluster and name their ideas by related concepts (see process in Figure 1). At the end of the CBW, facilitators shared a visual representation of the ideas and next steps, which are outlined below under the EA4 summary.
Figure 1. Consensus building workshop flow.
Conference summaries and recommendations
The roundtable discussions and CBWs produced rich ideas, strategies, and recommendations for action related to each EA’s theme. Below is a summary of each EA and participant-driven recommendations generated from its facilitated discussions. The complete list of EA-specific themes and related recommendations can be found in the Appendix.
EA1: Translating innovations in testing
EA1 focused on the complexities of COVID-19 testing in different populations and the need for collaborative research to better understand how to increase community-based testing efforts. Methods to quickly, resourcefully, and inclusively test for COVID-19 vary across communities; although new testing technologies are important, they must be paired with an understanding of the needs and cultures of the communities served. Roundtable discussions revealed the following recommendations:
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• Social Determinants of Health: Members of underrepresented communities must be included in all decision-making affecting them to avoid further disenfranchisement. Research involvement should afford community partners equitable payment, equal footing, and mechanisms for capacity-building.
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• Social and Economic Costs of COVID-19: Funding agencies (e.g., NIH) should use research findings to justify their funding priorities and decisions and align research objectives with the intention of providing resources directly to communities.
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• Robust Data Science: Research data should be used by community and academic partners to inform agile policies based on the science’s trajectory. The objectives of data collection should be defined well before commencing any project.
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• Trustworthiness and Equity in COVID-19 Testing: Researchers need to communicate the limitations of their COVID-19 expertise and partner with community members who can address gaps in their knowledge and serve as champions for testing and vaccination.
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• COVID-19 Communication and Messaging: Community partners should drive messaging campaigns; academic researchers should invest their time, resources, and funding to support community-led efforts.
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• Contact Tracing and Case Investigation in Vulnerable Populations: Community-based organizations can facilitate engagement with individuals and broader networks for contact tracing efforts.
EA2: Bridging infrastructures for equitable COVID-19 testing and vaccination
EA2 centered around identifying promising data sharing, partnership development, and communication practices that promote sustainable infrastructures for COVID-19 testing and prepare us for future pandemics. Roundtable discussions revealed the following recommendations:
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• COVID-19 Surge and Routine Testing: By leveraging trusted community-based organizations to connect with community members, academic researchers can ensure a consistent pipeline of accurate COVID-19 testing information to communities most impacted.
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• Data Sharing Equity: Researchers are responsible for sharing data with the community it is collected from in useful and culturally relevant ways [15]. Relying on aggregated data for making policy decisions, allocating resources, and planning health interventions harm the most vulnerable populations who are not consistently represented in that data.
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• Establishing Communication Frameworks: Effective communication frameworks must be established through trusted channels. Messages must be linguistically and culturally relevant and account for people’s vulnerability to misinformation.
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• Pandemic Preparedness: Developing community partnerships to identify resources and dissemination methods used during previous pandemics can support development of effective pandemic policies. Effective strategies should prioritize sharing relevant, community-informed, and up-to-date information.
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• Addressing Testing and Vaccine Policies Big and Small: Linking policy makers with communities to learn about and address community needs yields informed policies with greater potential for community buy-in. Having community champions serve as a bridge between communities and policy makers can help build trust.
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• Strengthening Multisector Partnerships: Successful, sustainable multi-sector partnerships must ensure equal access to information across literacy levels and develop response strategies that are adaptable to changing community needs. Community-driven decision-making is essential, as is integration of infrastructure and resources directly into communities. Community-driven approaches prevent disparities, build trust-based partnerships, and center the philosophy of “nothing about us without us.”
EA3: COVID-19 testing equity through messaging accuracy and accessibility
EA3 highlighted the impact of social media on COVID-19 messaging, and strategies for making social media an ally in addressing health disparities. Conference discussions explored how messaging around COVID-19 risk was communicated and the factors that affect whether people follow COVID-19 safety policies. The conference also explored use of data visualizations to effectively communicate COVID-19 updates. Attendees discussed these issues as well as how mental health, health literacy, and information access affected engagement with COVID-19 information. The following recommendations came from the EA’s roundtable discussions:
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• Social Media Messaging: Effective social media engagement recognizes the needs and limitations of communities and shares pertinent information through relevant and accessible channels.
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• Policies Through a Communication Lens: Disseminating information through community champions facilitates trust and ensures that policy messaging is effectively translated to the community.
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• Data Visualizations: Creating clear, concise visualizations tailored to the communities they are addressing allows for greater buy-in and information uptake.
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• The Infodemic and Mental Health: Historical barriers to mental health resources coupled with the chronic mental toll of the pandemic presented challenges for engaging with rapidly changing COVID-19 information.
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• Health Literacy and Information Interpretation: When developing COVID-19 resources, health literacy issues must be considered to ensure that information is effectively and meaningfully communicated.
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• Information Accessibility: When developing public health messaging, community champions can help to identify communication channels accessible and understandable by community members and utilized most frequently.
EA4: Sustaining lessons learned for community engagement in COVID-19 testing equity
As the final event in the EA series, EA4 focused on strategies for sustaining the lessons learned throughout the COVID-19 pandemic and RADx-UP initiative. It focused on building community-academic connections, sharing and enhancing knowledge of promising approaches for community engagement, and identifying strategies for translating knowledge gained into sustainable practices and policies for COVID-19 testing and vaccination. These strategies, gleaned through concurrent CBWs that fostered group agreement, are outlined below.
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• Disseminate Impacts Beyond the RADx-UP Community: Researchers are responsible for sharing information derived from the community with community members. Strategies for disseminating information can include public service announcements, editorials, and letters to policymakers.
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• Shift Power to Maintain Equitable Partnerships: Community members should be the drivers of policies that affect them. Academicians must consistently prioritize community agency when working in community-academic research.
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• Tailor Strategies to the Community’s Needs: Researchers should identify dissemination and communication strategies that best reach the communities they are working with and remember that strategies that work for one group may not work for another. Strategies include social media, newspapers, and radio advertisements targeting specific communities.
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• Fund Community Capacity Building to Lead Sustainability Efforts: Researchers should adequately compensate community partners and organizations for their time and effort. Linking communities with sources of funding and forming mutually beneficial relationships that bridge the community-academic divide will foster sustainable, long-term connections.
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• Share Research Results and Return Value to the Community: Research results should be shared in the language and form community members most use. Recognition should be given to community partners for their contributions; partners should be asked how they want to be recognized.
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• Build Capacity to Learn and Take Action Together: Treat community partners as experts in their own experience and defer to that expertise whenever possible. Invite partners to serve on study boards, study teams, and as co-authors on publications.
Discussion
The above recommendations reveal cross-cutting themes pervasive throughout the EA series and applicable within and beyond the RADx-UP initiative. First, centering community knowledge and involvement in all aspects of research design, conduct, and dissemination – from understanding the problem to identifying a research question and designing impactful solutions – was emphasized as a crucial component of successful and sustainable research. It includes understanding the value of community-academic partnerships and actively advocating to shift power away from academic institutions, as well as positioning community partners as key drivers of research, social change efforts, and decision-making [Reference Wallerstein and Duran16]. This shift in power dynamics underscores the importance of equitable funding strategies for community partners involved in research, including fair and accessible allocation of funding opportunities, awards, and resources [Reference Larrieta, Wuerth and Aoun17]. Attendees across all EAs advocated for increasing funding directly to communities to facilitate their leadership and pursuit of projects that address their priorities and needs.
The importance of acknowledging historical mistrust in research and medicine and devoting time, intention, and resources to building meaningful and trusting relationships between community and academic partners was also a theme across all EAs [Reference Jagosh, Bush and Salsberg18]. Attendees advocated for the development of culturally and linguistically relevant messaging, outreach, and testing and vaccination approaches to enhance trust [Reference Castro, Barrera and Holleran Steiker19]. They emphasized the desire of many community members to see themselves more accurately reflected in the health and research data that are being collected and disseminated, to receive information through relevant and trusted communication networks, and to be more involved in the development and implementation of public health efforts that impact them. Trust can be garnered and maintained by more effectively prioritizing communities in the ways outlined above.
Lastly, the need for sustainable, accessible, and inclusive approaches to knowledge sharing, including collaborative strategies for community engagement and capacity building, were underscored as crucial to the ongoing success of COVID-19 and pandemic preparedness efforts [Reference Hudson, Gilbert and Goodman20]. Dissemination strategies should be tailored to the communities meant to benefit from new knowledge. Furthermore, forums like the EA are crucial not just for sharing and co-creating knowledge across multiple parties, but for providing an avenue to translate that knowledge into recommendations for action. Although not part of EA efforts, accountability measures and evaluation frameworks could be developed to support next steps in this translation and ensure timely implementation.
A call to action
Unprecedented human and financial resources have been dedicated to addressing the COVID-19 pandemic via local and national initiatives such as RADx-UP. Ensuring that lessons learned from these investments are translated into sustainable action is the responsibility of all involved. The EA series can serve as a framework for this translation, through its facilitation of cross-sector idea generation and knowledge transfer. Through its community-engaged and longitudinal approach, the EA series provided a forum to explore and begin to address the innumerable upstream issues (e.g., equitable access to care, health literacy, trust in research) that were impacting COVID-19 testing equity in the early years of the pandemic. These issues were amplified during the pandemic and underpin most multidimensional and complex public health crises that require systems-based solutions. Successful approaches such as the EA framework can catalyze community-academic collaboration and elicit the voices and expertise crucial for confronting health inequities and spurring systemic change.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/cts.2025.10075.
Acknowledgements
The authors thank the RADx-UP project teams, keynote, breakout session, and Advancing Community Academic Partnerships (ACAP) speakers, and everyone who attended the RADx-UP EA series. We extend our gratitude to the numerous community partners who engaged with us throughout the EA series – including those who served on our Steering Committee and our Planning Team, as in-context interviewees for the Data Profile, as presenters and facilitators across all 4 EAs, and as reviewers for our Spanish- and English-language written materials. We would also like to extend special thanks to the RADx-UP CDCC network for their valuable input and support in the planning, execution, evaluation, and dissemination of the RADx-UP EA series: Duke Clinical Research Institute; Center for Health Equity Research and the NC Translational and Clinical Sciences Institute, University of North Carolina at Chapel Hill; members of the EA Steering Committee; the Evaluation Team; the Communications Team; the Data Profile developers and content contributors; the event platform and graphic illustration vendors; and the Planning Team volunteers. We also thank prior members of our Core Planning Team, including Lindsay Bailey, Kathleen Brandert, and Rachel Quinto.
Author contributions
Alicia Bilheimer: Conceptualization, data curation, formal analysis, methodology, project administration, resources, supervision, writing – original draft, writing – review & editing; Blen Biru: Conceptualization, data curation, formal analysis, methodology, project administration, resources, supervision, writing – original draft, writing – review & editing; Eno Idiagbonya: Conceptualization, data curation, formal analysis, methodology, project administration, resources, writing – original draft, writing – review & editing; Cassidy Fox: Conceptualization, data curation, formal analysis, methodology, project administration, resources, writing – original draft, writing – review & editing; Renee Leverty: Conceptualization, data curation, formal analysis, funding acquisition, methodology, project administration, resources, supervision, writing – original draft, writing – review & editing; Camille Brown-Lowery: Data curation, formal analysis, methodology, project administration, resources, writing – original draft, writing – review & editing; Lori Carter-Edwards: Conceptualization, data curation, formal analysis, funding acquisition, methodology, project administration, resources, supervision, writing – original draft, writing – review & editing.
Funding statement
This work was supported by the National Institutes of Health (NIH), which funds the Rapid Acceleration of Diagnostics–Underserved Populations (RADx-UP) Coordination and Data Collection Center (emergency cooperative agreement 1U24MD016258: AB; BB; EI; CF; RL; CBL; LCE). Funding for the RADx-UP program is provided by the Paycheck Protection Program and Health Care Enhancement Act, 2020, and the American Rescue Plan Act of 2021. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Competing interests
Dr Lori Carter-Edwards is the Associate Dean for Community Engagement and Government Affairs and Professor of Health Systems Science at the Kaiser Permanente Bernard J. Tyson School of Medicine and a consultant to the RADx-UP Coordination and Data Collection Center (NIH NIMHD grant 1U24-MD016258). The remaining authors have no disclosures.
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