Community-Engaged Research in RADx-UP: Lessons on Building Capacity Through Working Groups

Abstract

Objective:

The National Institutes of Health (NIH) frequently requests the formation of working groups (WGs) as a component of coordinating centers for large multisite studies. This study aims to offer insights into the importance of integrating community-engaged approaches in WGs to facilitate collaboration and capacity building in health equity research.

Methods:

Data from four different sources were analyzed to assess the organizational structure, performance, and effectiveness of nine WGs formed as part of the NIH-funded Rapid Acceleration of Diagnostics–Underserved Populations (RADx-UP) initiative during the COVID-19 pandemic. These sources include administrative documents, feedback surveys of WG members, focus groups of WG members, and semi-structured interviews of WG chairs.

Results:

RADx-UP WGs were organized to promote health equity through the development of communities of practice. The vast majority of group members responding to a feedback survey agreed or strongly agreed that the RADx-UP WGs had achieved this objective. The WGs were successful by engaging chairs who fostered a culture of collaboration, engaging a diverse membership in the co-creation of knowledge, and investing in an infrastructure that combined accountability with flexibility.

Discussion:

These lessons learned from RADx-UP can help future WG initiatives to optimize their effectiveness and promote health equity in national, collaborative research projects.

Introduction

In September 2020, at the height of the COVID-19 pandemic, the National Institutes of Health (NIH) committed $1.4 billion for the rapid development and implementation of COVID-19 testing innovation. ¹ Part of the larger RADx® program, the Rapid Acceleration of Diagnostics–Underserved Populations (RADx-UP) initiative represented the single largest investment in health disparities and community-engaged research (CEnR) ever undertaken by the NIH. ² The RADx-UP consortium was composed of the Coordination and Data Collection Center (CDCC), 137 CEnR projects, 70 community collaboration awardees, and 25 Rapid Research Pilot Program awardees.

To identify effective strategies for reducing COVID-19-related disparities, RADx-UP brought together a racial, ethnic, socioeconomic, and geographically diverse consortium of community partners and researchers. ³ One important strategy utilized across the consortium was CEnR practices, which have been found to improve research quality, support health equity, and enhance social capital. ⁴ Therefore, to foster receptive environments for testing and reduced health disparities, each RADx-UP funded project utilized CEnR principles, including partnering with trusted community-based organizations (CBOs).^5,6

NIH frequently calls for the formation of working groups (WGs) as a part of Requests for Applications for coordinating centers of large multisite, national studies. However, there has been scant research into the process of organizing WGs, establishing their goals and objectives, and supporting and evaluating their success.^7–9 Typically conceived of as a type of bridging organization, ¹⁰ WGs bring together diverse actors to coproduce knowledge, sense-making, and learning; to promote vertical and horizontal collaboration; to build trust; and to provide a space for conflict resolution. ⁹ WGs’ success in achieving their goals and objectives may be linked to characteristics such as their diversity, member cohesion, leadership centralization/decentralization, and resources for facilitation and management.^7,9,11

Because of the focus on community engagement throughout RADx-UP, WGs in RADx-UP were initiated as a type of community of practice (CoP), a group informally bound together to engage in a collaborative enterprise ¹² through a collaborative learning process. ¹³ From this perspective, a CoP’s success requires regular opportunities for thinking together and creating a shared understanding of problems, an openness among members to learn from one another and to share their lived experiences, and facilitation that promotes relationship building and trust.^13,14

Within the RADx-UP CDCC, WGs were at the heart of community engagement (Fig. 1). They served as collaborative hubs for accelerating capacity building among research partners from both CBOs and academia, developing practical COVID-19 outreach and testing strategies, sharing best practices, and implementing knowledge/lessons learned to support both project and larger program goals. WGs communicated regularly with the RADx-UP consortium and steering committee, the CDCC leadership and cores, and the NIH leadership.

FIG. 1.

RADx-UP Working Group Overview. RADx-UP projects and investigators include Phase I/II/III Community Engaged Research projects, Supplements, and Community Collaboration mini-grant awardees, and Rapid Research Pilot Program awardees. RADx-UP, Rapid Acceleration of Diagnostics–Underserved Populations; NIH, National Institutes of Health; CDCC, Coordination and Data Collection Center; WGs, working groups; CE, community engagement.

The WGs were designed to improve community-academic partnerships by emphasizing CEnR principles such as shared leadership and co-learning.^6,15 To align researcher and community priorities, WG leadership focused on creating an inclusive environment where diverse perspectives on research and intervention strategies could be shared and incorporated into ongoing practice. The intention was to promote relevant, culturally appropriate WG outputs and build community-academic capacity by enabling community partners to actively participate in the research process and helping academic partners to understand the resources and experiences of community partners. ¹⁶

The WGs were also designed to be fully virtual. The COVID-19 pandemic accelerated the use of video conferencing tools, introducing both challenges and benefits to online collaboration. WGs faced common obstacles associated with virtual interactions, including a lack of informal interactions that can foster relationship-building and the phenomenon of “Zoom fatigue,” which arises from the emotional effort needed to maintain group cohesion in a digital setting. ¹⁷ However, the virtual format allowed for more frequent interaction with participants geographically dispersed throughout the United States and electronic capture of discussions.

The purpose of this article is to describe the organization, structure, and management of the RADx-UP WGs and to synthesize both qualitative and quantitative evaluations of the RADx-UP WGs. Our analysis will offer insights into the importance of integrating community-engaged approaches in health equity research and the value of collaboration and capacity building via WGs.

Methods

Data

This analysis used data from administrative documents, surveys, semi-structured interviews, and focus groups to assess RADx-UP WGs’ organizational structure, performance, and effectiveness. Nine WGs with a total of 200 members from across RADx-UP funded projects met for at least one year. The participants in these assessments were all part of a WG. They included academic researchers, community partners, and health care professionals who worked on a RADx-UP funded project.

Administrative Documents: Upon initiation, each WG completed an activation template providing a name for the group, identifying at least one chair for the group, outlining the mission/purpose of the group, and establishing an initial meeting schedule. Within 3 months of the initial meeting, each WG was required to update their template to include at least one goal and an action plan to achieve those goal(s). To support these efforts and help WGs achieve their goals, the CDCC provided each WG at least one staff member to assist with scheduling meetings, taking notes and attendance, and providing project management. Meetings were facilitated by the appointed chair(s).

Three WGs—the American Indian and Alaskan Native (AI/AN) group, the Sexual and Gender Minority (SGM) group, and the Community Health Worker (CHW) group—chose not to complete an activation template or define specific goals and action plans, opting instead for a more informal approach to their CoP. These groups also did not participate in surveys. However, the AI/AN group participated in chair interviews. The SGM and CHW groups, having been recently established, did not have their chairs participate in the interviews, but did contribute to member focus groups.

12-month Feedback Surveys: Thirty-one WG members and four chairs across six WGs completed feedback surveys between March 2022 and July 2023. The 5-min online survey included close-ended and open-ended questions on the effectiveness of WGs in building relationships, creating a shared understanding of COVID-19 problems, facilitating community engagement, and assisting with the development of resources or materials for RADx-UP projects. The open-ended questions allowed respondents to provide more nuanced feedback, highlighting specific examples of success.

Chair Interviews: Between September 2022 and November 2023, WG chairs from seven WGs completed semi-structured interviews. Reflecting the community-academic partnerships of RADx-UP projects, the consented WG chairs interviewed included five individuals affiliated with academic institutions and six individuals affiliated with non-profit/CBOs. These 1 h interviews provided an opportunity for chairs to share their assessments of the structure and functioning of WGs and the factors that promoted or hindered the capacity of their WGs to achieve their goals. Interviews were conducted via Zoom, recorded, and transcribed.

Member Focus Groups: In March 2024, three focus groups were conducted with three or four WG members per group. Consented participants were from seven of the nine WGs. Two focus groups included only academic partners, and one focus group included only community partners. These focus groups provided a forum for in-depth exploration of the WG members’ experiences, opinions, and suggestions for improving the WGs’ effectiveness. Focus groups lasted 1–1.5 h and were conducted via Zoom, recorded, and transcribed.

Analysis

First, administrative materials were reviewed and summarized to provide an overview of each WGs’ purpose, number of members, number of meetings, start and end dates, and key accomplishments. Second, responses to the close-ended WG member survey questions were tabulated to provide an overview of the WGs’ success in meeting the overall objectives of building capacity through creating a safe space for the exchange of ideas, building relationships, and developing resources and materials for RADx-UP projects. Third, transcripts from WG member focus group and chair interviews were analyzed using thematic analysis. ¹⁸ Themes were identified through a process of coding, categorizing, and grouping-related content based on commonalities and patterns in the data. The analysis was conducted by two independent co-authors to ensure reliability and validity of the findings. All data were anonymized and securely stored in accordance with ethical guidelines.

Results

WG Organization

The CDCC initially organized five WGs between March and May 2021 (Table 1). Two additional WGs were formed in July 2021 (Child Health) and August 2022 (Social, Ethical & Behavioral Implications). The final WGs, SGM, and CHW groups were established in summer 2023. The initial WGs were identified by asking RADx-UP project leaders and staff to identify topic areas for cross-project collaboration and support. An additional query was sent to identify individuals interested in serving as a chair or co-chair of a WG. The initial WGs established were those with the greatest number of persons interested in the topic area. In recognition of the value of their time and expertise, nonacademic community partners participating in WGs received $150 for each hour of WG meeting time.

Table 1.

Overview of the Rapid Acceleration of Diagnostics–Underserved Populations Working Groups

WG	WG name	Key accomplishments	No. of members	No. of meetings	Duration
A	Understanding Social Determinants of COVID-19 Testing and Vaccination	Identification of opportunities to intervene through the creation of CLDs to visualize factors affecting equitable COVID-19 testing and highlight community engagement pathways, including transportation, access, digital literacy, and social needs Developed an accessible how-to video for at-home COVID-19 testing	62	23	May 2021–Apr. 2023
B	Engaging Hispanic/Latino/ Latinx Populations	Developed a bilingual flyer addressing pregnancy-related COVID-19 testing and vaccination concerns Published an article in the Journal of Clinical and Translational Science on enhancing Hispanic/Latino/Latinx inclusion in COVID-19 research. Hosted a Spanish-first panel discussion with English interpretation at the CHW Symposium Collaborated on updating the WG webpage to include multilingual content for Spanish-speaking audiences	33	27	May 2021– Oct. 2023
C	Building Community Capacity & Impact	Identification of opportunities to intervene through the creation of CLDs highlighting the impact of misinformation on equitable COVID-19 testing access Hosted a panel on sustaining CHWs through policy at the bilingual CHW Symposium	39	28	Apr. 2021–Sep. 2023
D	Engaging Black/African Americans	Hosted a virtual Town Hall on diverse communication strategies for COVID-19 Organized a speaker series on best practices for preventative care in predominantly Black communities Co-authored the “Advocating for Racial Equity in the US Health care System” guidebook Created videos showcasing CHWs and their impact, presented at the CHW Symposium Published an article featuring community leaders’ insights on pandemic adaptations and strategies	26	36	Apr. 2021–May 2024
E	American Indian and Alaska Native	Influenced change for Tribal Nations with the development of bridged CDEs, consulting on the NIH Tribal Data Repository and driving positive changes for RFAs Promoted member participation in CDCC committees for RADx-UP publications and data stewardship	40+	NA	March 2021–Oct. 2023
F	Child Health	Codeveloped Tier 2 pediatric questions for NIH RADx-UP CDEs Published two Journal Supplements in Pediatrics, February 2022 (12 articles) and July 2023 (14 articles) Led panel discussion on COVID-19 impacts in school populations at the 2023 RADx-UP Scientific Meeting	31	25	Jul. 2021–Aug. 2023
G	Social, Ethical & Behavioral Implications	Engaged NIH leadership in discussions on ethical concerns in the COVID-19 response Led a panel on the impact of community-partnered research at the 2023 RADx-UP Scientific Meeting	28	12	Aug. 2022–Sep. 2023

RADx-UP WGs established in Fall/Winter 2023—(1) Sexual and Gender Minorities and (2) CHW—were not included in this analysis.

NA, not applicable; WG, working groups; CLD, causal loop diagrams; CHW, community health worker; NIH, National Institutes of Health; CDEs, common data elements; RFA, request for applications; CDCC, Coordination and Data Collection Center; RADx-UP, Rapid Acceleration of Diagnostics–Underserved Populations.

Each WG met one or two times per month via Zoom for a minimum of 1 year. In addition, the WG chairs met monthly to facilitate cross-WG collaborations, discuss ongoing challenges, and codesign the WG evaluations. An incredible source of innovation, the WGs had a variety of goals ranging from creating a safe environment for listening and learning to more tangible deliverables that could be shared with other projects and beyond, like developing a toolkit or COVID-19 testing how-to video. As noted in their key accomplishments (Table 1), WGs successfully achieved these goals and created a range of outputs, including symposia, speaker series, publications, educational videos, and best practices or recommendations for data stewardship and engagement with specific populations, among others. Moreover, their regular meetings and communications with the RADx-UP consortium, CDCC leadership, and the NIH created numerous opportunities for networking and collaborations that amplified the voices of community members.

WG Feedback Surveys

The vast majority of WG members responding to the survey indicated either agreement or strong agreement that the RADx-UP WGs had a positive impact (Fig. 2). WGs were effective in providing (1) a safe space for professional exchange and support (91%, n = 32), (2) a shared understanding of COVID-19 problems (91%, n = 32), (3) an opportunity to build relationships (82%, n = 29), (4) an opportunity to improve community engagement (85%, n = 30), (5) an opportunity to learn from other RADx-UP project members (85%, n = 30), and (6) a forum in which to develop resources or materials to support RADx-UP projects (82%, n = 29). In their open-ended responses, the few WG members who disagreed or strongly disagreed with these statements primarily expressed concerns related to limited resources or conflicting priorities.

FIG. 2.

Working Group 12-month Survey Responses (n = 35). Notes: Responses to questions included in surveys of working group members on the effectiveness of working groups in (1) creating a safe space for professional exchange and support, (2) creating a shared understanding of COVID-19 problems, (3) building relationships, (4) providing an opportunity to improve community engagement, (5) providing an opportunity to learn about other RADx-UP projects, and (6) developing resources or materials to support RADx-UP projects. Surveys were administered to working group member 12 months after the initiation of a working group. Responses are limited to working group member attending meetings regularly when the 12-month survey was administered and do not reflect viewpoints of working group members with limited participation or attendance. RADx-UP, Rapid Acceleration of Diagnostics–Underserved Populations.

WG Member Focus Groups

Across all the WGs, six main themes emerged (Table 2): (1) Networking, (2) Collective Experience, (3) Protected Space, (4) Professional Development, (5) Empowerment, and (6) Knowledge Sharing. The Protective Space was a theme that emerged uniquely from the community partner WG participants, whereas the other themes were shared among all WG members.

Table 2.

Themes and Quotes from Rapid Acceleration of Diagnostics–Underserved Populations Working Group Member Focus Groups

Themes	Definition of theme	Illustrative quotes
Networking (A, C)	Opportunity to connect with a variety of stakeholders	A: “So, I think it’s helpful to be in a group and meet people from other institutions and in other [projects], especially with community members meeting across the different States. That was really helpful to get feedback for even like communication. What is our communication looking like? I’m getting feedback from people across the United States cause I don’t have that network. So having a network like that was really, really helpful.”
Collective Experience(A, C)	Shared struggle/overcoming shared obstacles; reaffirming; sense of community	A: “Sometimes, you know, we’re in our own little silos, even within the university. We don’t know what’s going on in the rest of the university, even if it’s, you know, here locally, and so to kinda really be able to see what the reality is like for folks all across the country in terms of the work that they do and sharing, and some of those challenges and opportunities. …And again, if I’m speaking about just myself, you know, personally, it was really reaffirming to kind of hear that. Maybe some of the thought that I could sort of speak up and have a voice and have something to say among a larger group of fellow collaborators. So, it was nice to kind of hear some of the same points, some of the same experiences, some of the same soapbox issues. There was a sense of commonality there and shared experience, even though we were working with such diverse populations and in completely different contexts.”
Protected Space(C)	Space to express; courage/power to share	C: “I think I kind of mentioned like as a community-based organization it helped to empower us. It helped us to see the value that we truly had, and it helped us in a sense, to protect ourselves from you know, threats that were coming from internally, the project. And so you know to me it was very eye opening to see examples of how good relationships could be with, you know, academic partners and how community should be valued. And to really help us to stand up for you know the role that we had.”
Professional Development (A, C)	Opportunities to build on skills and make professional connections	C: “Ditto, the opportunity to present to larger organizations. So, working on public speaking, but also the opportunity to engage with stakeholders I may not have had the opportunity to do in my previous work in my job, so connecting with partners who have a connection with the NIH or Duke, or other partners. So then, we can continue to learn and build, and hopefully follow up with those connections and then create sustaining relationships.”
Empowerment(A, C)	Feeling empowered through participating	C: “I would say that I didn’t really know what to expect. And so, you know, I was pleasantly surprised with the community that was created in the working groups, and the information that was shared, the learning and the support that that it gave me, a community-based organization, to kind of empower our role in research. So, it was very much a great learning opportunity for me and our organization.”
Knowledge Sharing (A, C)	Opportunities to share best practices and connect over shared problems and solutions	C: “Really for me I was just coming in trying to learn how, to really learn from other groups what they’re doing to apply that to my position cause I did a lot of community engagement with stakeholders, and then, of course, with COVID at the time, learning different ways to navigate that, and learning from other working groups.”

A, Academic Focus Group; C, Community Partner Focus Group.

WG members repeatedly emphasized the value of building connections and information sharing across institutions and research roles as well as opportunities for professional development such as presenting to other stakeholders and codeveloping materials and articles through involvement in their selected groups. WG members voiced appreciation for the feeling of empowerment that participation in the WG, related symposia, and presentations to the NIH provided for them. Through the WG, they gained inspiration and wisdom from how community-academic partnerships were conducted at other locations through the RADx-UP program.

Although they spoke highly of the WG experience overall, members also offered constructive critiques. Community partner payments were administered through a third party and were often delayed by 1–2 months. Community partners valued the payments reflective of their participation; however, timeliness was a concern. Members also expressed frustration about inconsistent attendance and participation by other members. This made meeting-to-meeting coordination difficult. Members also consistently wanted to have more diverse experiences and expertise represented in their groups. Most importantly, they wanted opportunities to meet in-person although Zoom facilitated more frequent meetings across disparate geographies and time zones.

WG Leadership Interviews

The analysis of interviews with WG chairs (Table 3) revealed four key themes: (1) Mobilizing a Community of Practice (CoP), (2) Leading and Facilitating a WG, (3) Engaging WG Members, and (4) Enhancing WG Infrastructure.

Table 3.

Themes and Quotes from Rapid Acceleration of Diagnostics–Underserved Populations Working Group Chair Interviews

THEME 1, Mobilizing a community of practice (CoP): Emphasizes how groups created CoP through supporting community engagement, fostering collective ownership and shared purpose, building collaborative networks for sustainable partnership, and promoting knowledge sharing and skill development.

A: “What I really enjoyed is […] the opportunity to do projects that require input and expertise from various participants or stakeholders. [….] I very much enjoyed, the networking and collaboration, and discovering different perspectives and experiences […].  A: “I think that’s something that needs to be showcased more [is] how people are developed, and how they use it to keep launching themselves forward.”

B: “People can come with their successes, and share those, and get some applause and praise. […] People can come with some challenges and we can brainstorm, we can share in the grief of some of this work and successes, and then share strategies around things that can help ensure some success. And so, our work group has shared some resources that have been beneficial across the members. […] So, I think that has a very important social support function and resource sharing function.”

C: “Building the networks, the relationships between the working group participants. I think those are sometimes things that we feel like are byproducts […] but really can be a catalyst to future collaboration or sharing of resources”

D: “I will say the biggest positive is the perspective. And when I say perspective, I mean […] one or two people will throw something out there, and it will just completely reshape the way we’re thinking about it, and it will produce a better product.”

F: “I just feel like personally, I’ve learned some new skills, and then I’ve also just grown, both personally, professionally, with the relationships with these people that I would not have otherwise interacted with.”  F: “So it’s working group members who have shared goals and a commitment to show up. […] And establishing a culture where everyone’s voice is valued (positive or negative) and is welcomed.

G: “I enjoyed meeting people and learning about the different projects. I think some of what I learned from other projects; we ended up trying to incorporate into our own.”

THEME 2, Leading and Facilitating: Demonstrates how chairs’ passion and expertise combine with dedicated operations support to foster collaboration and promote working group productivity.

A: “In the last few years there is more and more inclusion of working groups into the requests for applications […] I think that’s a great idea, but I also think that it needs to be given a reasonable infrastructure support in terms of staffing resources, time, etc. for it to work well. Including things [like] compensation for community members, for academic participants, and not just for the time of the working group, but for all these countless hours in between that can very easily spiral out of control and become a full-size project that’s actually not funded, and it becomes burdensome on everybody.”

C: “I think the passion and the commitment of the chairs […] is really a driver of success. I’ve just been really impressed and energized by the other chairs, and that they’re just really invested in the work, and wanting to be of use and service. So, I think that’s a critical success factor.”

G: “Our support team for our working group was phenomenal in helping to offload some of those structural parts that feel kind of tedious, like the writing of goals or objectives, or preparing the agenda, or even preparing slides for the meeting. Like that was hugely helpful for us to not feel like we had to do [it] all.”  G: “I felt pretty good about our co-chair model. Because it just eases some of the burden from feeling the responsibility to lead the group. […]”

THEME 3, Engaging WG Members: Summarizes the value of diversity in working groups and the successes and challenges of engaging WG members (e.g., fostering inclusive participation, creating a protective space, and sustaining momentum).

A: “So the diversity of perspectives. It is critical. It’s also a challenge how to make this work successfully. […] No matter how important I think an issue is, if other work group members don’t think the same way or don’t have a buy-in into that it’s hard to move along. […] It’s very, very important for the group as a group to agree on the common goal.  A: “We’re all really busy, right? And we may meet only once a month, and there’s a discontinuity that happens with that irregularity, both losing the momentum and the work that we’re doing. But also not everybody that started from the beginning is still active now. So, there has been quite a bit of turnover, […] So that has led to just making it a little harder to achieve some of the goals.”

C: “Yeah, I think that providing a space to vent has been the biggest impact. I mean, we’ve had some discussions in a group where folks just came in, and they were like they just needed to say what was happening. You know, they’re dealing with a very current pressing public health emergency. […] I think that those spaces have been one of the biggest impacts for that community voice to be heard.”  C: “[I struggle with] how to keep things like moving forward [...], how much to ask of the working group participants outside of the meeting context. I don’t know what’s the right balance […] I think that’s another place where I’ve sort of gone back and forth about trying to determine what’s a reasonable ask.”

E: “[We] always took the temperature, took the time to check to see how everybody’s doing, and you know what their needs are. If they want any changes, or they have any suggestions, and you know [we] always took that extra time to do that [...] and I think that was really vital to the success of the work group.”

F: “It’s really important to have diversity within a working group, and to have different perspectives represented […]. Unfortunately, we’re a little bit too homogeneous. But, […] maybe that’s been good […], because it has allowed us to accomplish quite a bit. So, […] maybe what is a limitation is also a strength.”

THEME 4, Enhancing WG Infrastructure: Highlights the importance of fostering effective collaboration by establishing goals and accountability, leveraging technology, balancing structure with flexibility, and creating multiple avenues for communication with the NIH and other RADx-UP components.

A: “We usually try to do that [brainstorming] in some sort of collaborative manner, using like Miro typically, because it is a way that allows us to document that information in a way that people can either just speak it on the call or type it indirectly in the chat. It’s just more dynamic.”  A: “I see that information being collected at different levels and [ the WG is] one piece of the larger puzzle that is informing the greater framework.”

B: “I think the other thing that works well is to always have some time for people to share their challenges and successes, […] That’s where we learn about things that we’re not on our like radar. So, […] I think that is important to have an agenda and also room for non-agenda items to emerge.”  B: “I also appreciate [the re-activation/deactivation process] by a working group. […] having that flexibility and the feelings of ownership.”

C: “I think the remembering that, it’s not all about the products and deliverables, but it’s also the relationships between the working group members. [...] It’s important to be intentional about building in opportunities for that as well in addition to working toward something that’s going to come out of it.”

E: “I thought of myself as somebody who’s serving this group […] if we all felt that this needs to go up the chain, we’ll make sure that happens too, and unfiltered. No editorializing things, just the way people said it and just pass it on. That’s what we thought was our goal, and that’s how you can have an honest conversation. There would be no varnishing of facts, none of that.”

F: “You’re constantly revisiting, “are we accomplishing what we want to accomplish?” I mean, in one of our most recent meetings one of the members said, “I think we need a clear set of goals around this, like what is our metric for success? What are we doing next? You know what is our timeline?” F: “Acknowledge that every workgroup is going to have a different pace of working, […] It’s going to have a different composition, it’s going to have a different sort of rules or engagement, and it’ll form its own personality. And I think […] that you all have […] help[ed] support that.”

G: “Creating a pathway for the voices of researchers on the ground to communicate with NIH in a collective way. […] I think that by having a group of people together you do feel that collective voice to be able to raise concerns that you have rather than feeling like you’re just solo on you know, on your own island expressing concerns to your program officer. There is value in that collective voice to NIH.”

WG, working group. See Table 1 for WG names A–G.

One of the primary functions of each WG was mobilizing a CoP. Chairs indicated that WGs did this by fostering a collaborative environment where members actively participated in shaping the priorities of their WG, sharing knowledge and resources, and building a network of supportive relationships. WG meetings helped unify diverse perspectives, create a forum for recognizing members’ contributions, and ensure that community needs remained central to the objectives of the WG. The coproduction of knowledge and resources through the WGs led to innovation that enhanced the WG’s collective impact and development of new skills (e.g., use of digital tools, writing, editing). As a result, several chairs believed that WGs could serve as a catalyst for future collaborations.

To successfully develop a CoP through each WG, the chairs noted the need for expert leadership and facilitation. WG chairs were not only knowledgeable about the themes of each WG but also genuinely passionate about their collective purpose and goals. At the same time, WG leadership required significant time and facilitation skills. Therefore, WGs that had co-chairs appreciated having each other to share responsibilities and would also have appreciated some training in facilitation. In addition, chairs valued the presence of dedicated CDCC staff. These personnel enhanced the productivity of WGs by alleviating administrative burdens, ensuring continuity in meetings, maintaining high standards of professionalism, and allowing leaders to focus on strategic collaboration and productivity.

The success of WGs depended not only on leadership and facilitation but also on participant engagement. WG chairs noted that diverse representation within their WGs contributed to improving their understanding of complex issues. Nevertheless, WG chairs and the RADx-UP CDCC faced challenges in recruiting diverse participants from community partners involved in funded research projects due to limited access to their contact information. Diversity and membership turnover also posed challenges. The WG chairs had to prioritize respect and openness to ensure all voices were heard and to create a protected space in which WG members could express their disappointments and frustrations. Consequently, decision-making required more time than initially anticipated. Although WG chairs believed that they had successfully fostered inclusive participation, they struggled with sustaining participation and momentum over time. Thus, chairs felt the need for more strategic planning and task delegation to align with participants’ availability and commitment levels.

The WG infrastructure was also crucial to supporting chair leadership and participant engagement. The WGs initially appreciated (initially) the goal setting and accountability required by the WG activation/deactivation process and 12-month feedback surveys. Establishing clear WG objectives and performance metrics was essential for maintaining engagement, momentum, and measuring success. However, over time, these requirements became burdensome, and some WGs wanted to move toward more informal CoPs. In addition, WG chairs leveraged virtual meetings and digital platforms (e.g., Miro) to allow for diverse participation and make discussions more engaging and inclusive. However, some members needed time to learn how to use these tools. Furthermore, the WG chairs balanced structure with flexibility by allotting time for icebreakers to help members get to know each other, using Zoom breakout rooms for smaller discussions for rapport building, and allowing time for nonagenda items or more discussion as community and public health priorities shifted. They acknowledged that every group was different, with a different culture and pace of work.

Finally, the chairs valued the built-in opportunities to engage with the RADx-UP consortium, CDCC leadership, CDCC cores, and especially the NIH. They emphasized the importance of their WGs in elevating community concerns and ensuring that the voices of underrepresented groups reached decision-makers. Moreover, they emphasized the reciprocal obligation that funders (e.g., NIH) have to embed opportunities for community feedback at every stage in the research process, acknowledge feedback, and address the insights from WGs. This follow-through on WG concerns and suggestions is essential to building trust.

Discussion

The NIH frequently requests that coordinating centers for nationwide research studies include WGs. However, there is little guidance on how best to organize WGs, especially for community-engaged collaborative research studies. The RADx-UP CDCC organized WGs to promote health equity through the development of CoPs. These CoPs prioritized collective learning, professional/skill development, networking to build sustainable partnerships, and, above all, community engagement that empowered participants to voice their needs. The administrative documents, 12-month survey results, member focus groups, and chair/co-chair interviews showed that WGs were largely successful at achieving these priorities while also producing several tangible products.

The success of the RADx-UP WGs relied on several factors. First, the co-chairs effectively facilitated discussion, creating a safe space for knowledge sharing and operational support to manage logistical challenges and free chairs to focus on strategic objectives. Second, a diverse group of participants was engaged and collaborated in developing the objectives of the WG, took time to build trust with one another, and valued the opportunities for networking and skill building that the WG provided. Third, an infrastructure that balanced accountability with adaptability and leveraged virtual and digital technologies to facilitate discussion, idea generation, and decision-making.

The lessons are clear. As NIH and other funders continue to encourage WGs as one of many strategies to support national, collaborative research projects, they need to ensure that their policies and procedures allow for feedback from WGs at every stage of the research process. This includes proactive outreach to include underrepresented communities and policies that promote their inclusion in decision-making. Funders, coordinating centers, and research projects need to invest in WG infrastructure. This includes funding for in-person meetings/conferences, timely compensation for community members, operational support staff, and time for research staff participation in WGs. This also includes investing in digital tools that enhance collaboration and training in these tools to ensure that all WG members utilize them comfortably and effectively. Finally, those implementing WGs need to balance accountability with adaptability by establishing action plans with clear goals and metrics for success in collaboration with WG members, allowing members to contribute based on their availability and expertise, and regularly checking in to revise action plans as circumstances change. By embracing these lessons learned from RADx-UP, future WG initiatives can optimize their effectiveness and promote health equity in national, collaborative research projects.

Authors’ Contributions

M.A.L., H.G., and K.M.P. contributed to conceptualization, methodology, and writing the original draft. M.A.L., H.G., E.M.D., M.D., J.D., L.F., B.F., R.M.G-G., A.O.H., I.K., S.K., H.L., T.J.M., G.R.O., D.D.W., M.W., and K.M.P. contributed to data curation, project administration, and reviewing and editing. K.M.P. contributed to funding acquisition.