Engaging community partners helps public health researchers to (1) identify meaningful questions based on their authentic knowledge and lived experience, (2) develop protocols responsive to community needs, (3) ensure that interventions are culturally and contextually relevant, and (4) disseminate findings accessible for communities.1–3
The Rapid Acceleration of Diagnostics- Underserved Populations (RADx-UP) program, created by the National Institutes of Health, is a consortium of more than 125 research projects aiming to understand and reduce COVID-19 disparities in morbidity and mortality through community-engaged research partnerships. Ensuring community partners’ voices remain central to promoting access to high-quality and low-cost testing has been fundamental to RADx-UP. Specifically, fostering community engagement in COVID-19 research is essential to incorporating community voices in implementing and disseminating findings. It ensures that testing meets their needs and promotes building community‒academic trust in research. More importantly, it catalyzes the construction of healthier communities by dismantling health disparities.
Within the RADx-UP program, the Community Engagement Core (CEC) facilitates strong community involvement, alignment, and impact on addressing barriers to COVID-19 testing equity and translating research into practice. The CEC also is critical to meeting communities’ social needs in the midst of the pandemic, including building social networks, promoting trust in academic partners, and fostering mutual respect. These are forms of social capital that develop within community‒ academic research partnerships attributable to meaningful engagement, social interaction, formation of networks, and recognition of shared goals.4,5 To further improve our potential to build community social capital and inform strategies to leverage CEC efforts, we conducted a listening session with four community partners using a semistructured interview guide on the successes and challenges of the RADx-UP program and, more generally, potential for building community social capital.
LISTENING SESSION
Attendees consisted of an executive director of a health coalition in Garden City, Kansas (CP1); a founder and director of a Christian faith community-based organization in Shubuta, Mississippi (CP2); a community partner working with a RADx-UP study aiming to understand the effects of COVID-19 and violence within African American communities in Chicago, Illinois (CP3); and a chief executive officer of a minority health institute in Jackson, Mississippi (CP4). Attendees provided consent to record the session and include their direct quotes. The session was facilitated by a RADx-UP staff member with experience in qualitative interviewing and facilitation. The following excepts are drawn from the transcribed session:
Facilitator (F): What is your greatest success or accomplishment as a participant within the RADx-UP program?
CP4: One of the successes with this project is in the public health response. There was more community involvement. There was more listening to the community and developing ways to get information out as well as resources out by listening and using the information we received. By doing this, I think we were able to increase access to COVID-19 testing, and we also evolved as the pandemic shifted. Whereas we were sending people to community health center health care providers, we now have self-tests, and organizations are also making it more convenient for the community to have access to testing. So, I think those are some pretty big success[es] in trying to address this pandemic.
CP2: Just the mere fact that we were funded in the timeframe that we’re funded in and being able to get out into the community and be a help to those who are in need, without them leaving their homes.
CP1: I think that for us being a community coalition (not clinical or research base). The community looked at us as being [someone they were] able to trust. And going into the underserved communities and taking it to them, rather than in the clinic.
F: What strategies utilized by the RADx-UP program have promoted effective communication with your community organization?
CP1: Our approach was taking resources to them. And, even though I may not be able to speak their native tongue, . . . [sharing] something that is pictorial. Everybody can read pictures, so that is one of the things we did early on.
CP4: We became very proficient with social media and using the different mediums so we could reach different audiences. I might be good at Facebook for my age group, but I noticed that the other age groups are using different things. So, we became very efficient using social media.
CP3: When we’re looking at our communities it’s not a one-size-fits-all approach. Even if they share very similar demographics (our study is based on African American communities), there are still differences. We had to learn to be flexible when looking at different approaches, and we saw a large increase of participation from that.
CP2: We utilized print ads to reach out to our local community. Newspapers in the counties that we were serving aided our reach, and the first responders with the local emergency management along with the local TV stations disseminated information.
F: What strategies utilized by the RADx-UP program have built trust and mutual respect?
CP4: The main thing we learned is communities want the resources. We just have to provide the platform for communities to have access and to help them navigate through the logistics.
F: How did you engage the community organizations to tell you what they needed?
CP4: Provided them with the resource once they were able to tell us what they needed, matching them with health care providers and testing. [Providing them with] whatever they needed to get it out to their community.
CP3: We relied on our faith-based leaders within the communities, as they already have established trust with families. So we did a lot of work with them to assist with disseminating information and getting feedback from the community.
CP1: We started going to food pantries and school-district food distribution centers every day and putting information and tests in the food boxes. The pieces of paper had a QR code that they could go to [to] find out where to get tested and what to do if they tested positive.
F: What have you enjoyed or valued about your participation as a community partner in RADx-UP?
CP4: I have valued the community-based approach that was taken and the nontraditional and traditional partnerships that have been formed because of it. I think that this project really helped to elevate the community’s voice. [This] especially helped us understand the importance of all partnerships. RADx-UP enabled us to make traditional and nontraditional partnerships, so that we could access COVID-19 testing, vaccination, and other resources available to communities that [they] may not have gotten otherwise.
CP2: To piggyback off of [CP4], it’s about the collaboration that we would have never had a year ago. We are now able to collaborate with some members on another program that has nothing to do with COVID-19 testing. So, I think this participation has stretched us all, but in a good way.
CP3: Putting a voice to an issue, but allowing the community members to use their voice.
F: What can we do to make the partnership and/or experience of community partners in RADx-UP more efficient, effective, and rewarding?
CP4: Thinking about how we engage communities in ways that they feel is meaningful. [Letting them know] what will they get [out] of this participation. A lot of times we say partnership, but it is not necessarily a real partnership because the community is often overlooked. So, I think that in order for us to be successful in any intervention, we have to put the community first. We have people that are trusted in the community doing the work. We also have to implement strategies in some cases that maybe we don’t understand because we see life through a different lens. One example is, for a lot of our programs, we do gift cards. Some funders don’t recognize the value of giving gift cards in community-based settings. But the reality is a lot of times you have to [in order to] make it beneficial for the community to even show up beyond just having a trusted partner there.
CP2: It would make it so much easier if we had one designated person. I don’t even know if it’s possible. But, one person to walk us through the whole grant process [would be helpful]. It would be a little bit more streamlined. . . . It [the current process] is a little bit frustrating. Like you’re trying to learn a process. Having someone to walk with you would make it not so cumbersome to us.
CP1: I second that, about having more centralized communication.
CP4: I agree that it needs to be streamlined a little bit. For us the issue was the budget communication.
F: How can RADx-UP support effective communication between community partners and academic partners?
CP4: The ultimate outcome is that the academic partner is doing their part of the partnership. So just clear communication about the role of the academic partner and what they expect to come out of the partnership would be helpful. We’re giving them all the data. But at the end of the day, what will the data on the academic side be used for? And how can we find out [what is in the data] and put it back into the community when this is over?
F: What advice would you give to [the National Institutes of Health] to facilitate the development of future community and academic partnerships?
CP3: In order to remain successful with those partnerships, [my advice] is to not just leave them once you receive your data. Keeping that relationship open and sharing any next steps, even after the data is collected, [is important]. A next step could be dissemination of additional resources that may not be COVID-19‒based, as other critical diseases aren’t going anywhere for these communities. So, sharing different resources that the communities can also use after the fact and keeping that door open [would facilitate future partnerships].
CP4: I just wanted to emphasize what she just said. I think the best way to build partnerships is not [just] when you need them. For a lot of us, what we find is that we’re not invited until there’s a need. That connection needs to remain even after we’re done with this project. Keep them engaged. So that when you need them again, they know that you’re a true partner and you’re not just here because this is the next big thing or this is the public health issue of the year.
FINDINGS AND NEXT STEPS
Engaging community partners in public health research and addressing community social needs together fosters cultural relevance, improves research quality, and promotes health equity. The community partners in our listening session voiced positive experiences related to (1) promoting test access for community members with tailored culturally and contextually relevant interventions; (2) reducing barriers to effective communication with community members as facilitated with technology, media, and videos; and (3) flexibility in research and dissemination methods to support mutual respect and trust.
Interviewees also made suggestions for improving community‒academic partnerships to support more efficient, effective, and rewarding experiences—specifically, (1) better tailoring of incentives to community needs, (2) improving support for navigating funding, and (3) fostering more centralized communication and clearer expectations and goal sharing. As community‒academic partnerships proliferate across the RADx-UP consortium, these efforts may support social capital by fostering ties that allow trust to permeate through the community‒academic partnerships and into the larger community. Community partners also emphasized the need for keeping communication and collaboration opportunities open beyond data collection and project completion. Taking this into account, funders can invest in building community social capital in ways to support sustained research partnerships, ultimately fostering civic engagement via research.
Understanding and addressing the fundamental causes of health disparities related to COVID-19 and beyond demand concerted efforts to foster alliances between community partners and academic researchers that elevate the voice of community members. Findings from this listening session can be used to strengthen community‒academic research partnerships and build social capital both within the RADx-UP program and across community‒academic alliances elsewhere. Listening to community partners, recognizing power dynamics, and engaging in honest partnerships are fundamental to forging successful efforts to reduce health inequities in service of authentic community‒academic partner engagement.
ACKNOWLEDGMENTS
Research reported in this Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) publication was supported by the National Institutes of Health (NIH; grant U24MD016258).
Note. The content of this editorial is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
CONFLICTS OF INTEREST
E. M. D’Agostino receives support for research from the NIH, the National Institute on Minority Health and Health Disparities (grant U24-MD016258 and grant OT2HD107559-02), the Eunice Kennedy Shriver National Institute of Child Health and Human Development (grant R01-HD100417-01A1), and the American Heart Association Strategically Focused Research Network (Pediatrics). G. Dave’s work on this project was supported by the National Heart, Lung, and Blood Institute of the NIH under awards R01HL150909 and R01HL157255; he also reports research grants from the NIH, Health Resources and Services Administration, North Carolina Department of Health and Human Services, and Robert Wood Johnson Foundation outside the submitted work.
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