Building a Trusting Foundation during the Pandemic Goes a Long Way Towards Community-Engaged Research
What is IRL. The Interdisciplinary Research Leaders (IRL) fellowship program is a three-year leadership development program whose goal is to foster high quality, community-engaged, action-oriented collaborative research to promote community health equity. The RWJF-sponsored IRL fellowship emphasizes a shared leadership approach to research that builds on existing networks in both academic and community settings. Fellows are committed to community-driven collaboration to ensure credible data drives actionable change that leads to a culture of health. Teams are comprised of one community partner and two research partners who work together on a research project as well as participate in the fellowship program.
Why we organized this special session. Regardless of where teams are on their three-year IRL journey, fellows have been sharing how their communities are responding to the norm-altering disruption of the COVID-19 pandemic, structural racism, murders of our Black community members, and political turmoil surrounding the presidential election. Fellows have also been sharing the challenge of continuing their research and community engagement activities in a way that centers community voice during this unprecedented time. The January 2021 cross-cohort virtual forum was designed to share IRL teams’ common ground and leverage their experiences tackling community engagement and research challenges.
Based on what we knew from our fellows’ 2020 reports, we invited five teams from Cohort 3 (2018) and Cohort 4 (2019) to share engagement tools and strategies they have used successfully to navigate the new terrain.
The following IRL Team panelists provided short presentations highlighting their work.
- Team Colorado (2018), based within a grassroots organization in Fort Morgan, is leading systems change that advances health care access for hard-to-reach immigrant populations in rural Colorado
- Team Colville (2018) collaborates with a tribal community to redesign and evaluate a novel trauma-informed intervention that revitalizes indigenous traditional lifeways to improve community health and well-being
- Team Western NC (2018) and their community advisory board explore rural African Americans’ perceptions of racism and health with the goal of identifying ways providers and decision-makers can implement policies to reduce health disparities
- Team Bootheel (2019) has convened a network of 60 social and human service providers to create integrated and equitable systems of care for rural communities in Southeast Missouri
- Team Mississippi (2019) is activating community agricultural knowledge and assets towards a more sustainable, equitable, and healthy food culture and economy in Utica MS
Community engagement tools and strategies
Engagement tools. Prior to COVID-19, the primary, default way of strengthening relationships and trust with community members was to convene in-person community meetings. COVID-19 forced every team to pivot to virtual meetings (although, while weather permitted, several teams also hosted occasional in-person, social-distanced indoor and outdoor gatherings). Teams quickly harnessed their creativity with the use of technology in virtual meetings to foster connection, engagement, and fun (e.g., Jamboard, breakout rooms, google slides, winter holiday games, etc.). Although research topics varied across the five teams, all of their projects are set in rural communities. This highlighted a persistent challenge: the digital divide created by limited to no broadband connectivity nor access to high-speed internet nor cellular devices and, in some cases, a lack of virtual meeting tools or basic technical support. To bridge this divide, teams relied on a combination of telephone, email and text messaging to supplement virtual and physically distanced meetings.
Several teams also engaged community members by providing needed provisions via care packages and curbside pickup (described below). Travel and meeting restrictions led the IRL program to redirect in-person meeting and travel funds to the IRL Community Support Fund to each team via the community leader’s organization. Although limited, these funds allowed teams to respond to emerging and pressing needs in their communities.
Teams developed flexibility in building and maintaining relationships – and agreed to alternative methods of connection to keep continuity. They have learned quickly that, while mostly virtual connection is very challenging and has many inadequacies, virtual connections can also build community trust, and at times overcome challenges with more traditional ways of engagement (e.g., no time spent on the road traveling to/from in-person meetings, thus enabling more efficiency, and no transportation cost which helps level the playing field).
Engagement processes. Several themes emerged through panelists’ stories of community engagement that would enhance and fuel current and future research activities: (1) prioritizing relief and relationships over research, (2) re-confirming the importance of visual and tangible human connections, and (3) focusing on the big picture and being flexible.
(1) Prioritizing relief and relationships. In the words of Team Bootheel, “asking intentionally and listening emphatically” allowed fellows to act on, and support community needs while still being the face of their research project even when the research itself was paused or decelerated. They organized weekly meetings for their network of members leading to the creation of a resource website (e.g., updates on COVID-19 rates, testing sites, resources for rental, food, and broadband assistance, ride shares) and Facebook page. Network members requested they continue to meet weekly – supporting each other within the group as well as other partners who were not necessarily part of the network. They also organized touchless, curbside mobile food pantries that provided food items, COVID-19 educational information, masks, and voter registration information. The team also asked community members what other needs they had in order to assist with future planning. Team Western NC’s Community Advisory Board (CAB) members continue to guide the project’s responsiveness to community need, blurring the existing mental divide between research and engagement. Another personal touch included care package delivery. Early in the pandemic and in collaboration with the Asheville Buncombe Institute of Parity Achievement (ABIPA), the Team created care bags with COVID-19 protection. Receiving these hard-to-find and expensive items brought tears to community members’ eyes and let them know the team was there for more than the research. Team Colorado developed an innovative, grassroots approach to reaching hard-to-reach immigrant populations using an iterative phone tree methodology that enables more rapid assessment of immigrants’ health and social service needs as they evolve over the course of the pandemic. Grass roots organizers support volunteer member leaders (Caracol leaders) working with the community leader’s organization to telephone community members with short surveys to ascertain their needs and connect them to resources. Each round of the phone tree is on a different topic. The first round focused on urgent needs for food, rent, and COVID-19 testing. Later rounds have focused on access to health insurance, health care, medications, paid leave along with priority outreach topics like the census and election participation, and policies needed for equitable economic recovery. After each round, research partners analyze the data and results are reported back to community members. Caracol leaders have connected with 500 people since March 2020.
(2) Re-confirming the Importance of visual and tangible human connections. Moving to virtual meetings was a struggle for Team Western NC due to broadband instability. Adding photos for CAB members whose videos were unstable helped personalize these meetings. They are moving beyond written word, exploring new approaches to reciprocity and reach, making their work and support of the Black community visible by commissioning the “See me” billboards to contrast confederate flags flown in their region. The billboards feature work by artist and CAB member Ann Miller Woodford. Team Mississippi organized a drive-through, no-contact community “Meet, Greet and Eat” event. Data were collected as cars entered the park. Once in the park, members of the CAB were stationed at designated parking slots to share information about the project, at a distance, as runners filled food orders and delivered them to cars. The event was livestreamed so research partners out of state could join and bridge the distance. Team Colville provided wellness kits to tribal families to practice good mental health hygiene and enhance family engagement during the pandemic. Items included in the wellness kits were culturally relevant and supported families to practice mindfulness activities together and individually. All items were locally sourced: cedar bundles for prayer (instructions provided), beading kits, dandelion tea, COVID-19 information, masks, and a children’s book by a tribal member in one indigenous language with spaces for family to fill in words from their own dialect.
(3) Focusing on the big picture and being flexible. Pandemic-related disruptions initially led to a sense of uncertainty and necessitated rethinking research projects and methods. Panelists adapted data collection and engagement methods to reach the same goal in a different way (e.g., telephone interviews versus focus groups and workshops). This allowed teams to focus on the big picture (which varied across cohorts). For example, some teams postponed data collection and focused on other aspects of their project such as upstream policy work and cultivating remote relationships with key decision makers and allies. Teams also took time to slow down, provide resources to communities, focus on self-care, and on their personal connections with one another and their CAB, thus nurturing a sense of partnership and community that is essential to enduring and deep change.
Opportunities of COVID-19 in Strengthening Community Relationship
COVID-19 encouraged equity in relationship dynamics, and our fellows embraced this challenge. The physical restriction in social engagement and resource shortages due to the pandemic brought unique opportunities for our fellows across cohorts. First, they prioritized community engagement and building trust over any other research-specific agenda. Ironically, although solid and inclusive community engagement is the bedrock of any community-based action-oriented research, too often we see the research agenda as the priority. IRL leadership has certainly witnessed this weakness in our program, perhaps due to the intense research timeline during the fellowship, insufficient lead-time for research-community relationships to settle, or a mismatch between the true strength of community engagement and our perception from a distance. We believe community-engaged research efforts that do not start with community building do not have a strong foundation for success. We also believe that treating community leaders and residents as equal partners in such efforts cannot be reverse-engineered later to meaningfully share power – creating a foundation of trust and reciprocity has to be an intentional focus from the start.
Second, COVID-19 brought out the indispensable need for and power of the community partners in the teams more tangibly than ever. Because keeping the communication line and thread of trust with the community was paramount, research partners looked to community partners to spearhead the engagement endeavors, which allowed a level playing field between the research partners and community partners. Ensuring equity between the research and community partners has been a challenge at IRL, in terms of decision-making on research methods and process, fund/resource distribution, dissemination plans, and conflict resolution. Fellows – research and community partners alike – as well as the IRL leadership needed to release much of their control over what was already set as research timelines and preconceived solutions to community problems. This forum highlighted key principles for addressing this challenge: one-on-one conversations in the community with those most affected, understanding their needs and aspirations, offering tangible and instrumental support to build genuine trust, and valuing community authority in decision-making and leadership.
Lastly, we have a more visceral understanding of what it means for members of the community to have equal power in determining the IRL project’s agenda and resource allocation, because they are the most directly impacted. This means that residents are not merely providing input, serving as advisors, helping to test ideas, or interpreting information but they also are fully involved at every step and in making decisions about initiatives and other matters that affect their lives. This also means allocating and investing time and resources from the start to build trust and engage meaningfully with each other. Because of the pandemic, where the vulnerability and depth of marginalization was again brought to the fore, the need to address these challenges and center community voices became a priority. An adequate understanding of the root causes of the (research) problems, as well as an appropriate vision for a transformed community, will not be possible without engaging those most directly affected.
IRL’s Community of Practice
What can our fellows learn and apply in their own work? What can the IRL leadership learn and do to support our fellows further? IRL has created a model and opportunity for community-driven cross-pollination towards evidence-gathering and transforming the community’s culture of health. This model holds space, or a container, for our fellows to build an inclusive, collaborative, interdisciplinary community of practice. Because of IRL’s distinctive, hybrid academic-community nature, there are yet few external sources of best practices, written evidence of sustainability in outcome or capacity building, and description of what rigorous interdisciplinary research might be. Yet, it is our goal to build and share knowledge continuing from the past five years of experience – in a wide range of contexts and circumstances including the COVID-19 era and the American political landscape. 2020 has offered us a critical, if forced, opportunity to pause and (re)consider what IRL’s container will look like in the new normal.
Flexible budgets and programming. We have learned that the community support funds, a flexible discretionary award to support community need and action elevated pressing health equity issues. It was a small amount ($6,500), but went a long way in offering instrumental aid for community members and in building trust. This attests to the reality for our community leaders who do not have much unrestricted funding. We also heard that flexibility in budgeting and spending is a great strategy and tool to accommodate the fellows’ work. Analogously, flexibility in scheduling and research timeline has alleviated the fellows’ stress and pressure to focus on fostering community relationship.
IRL communication network. Establishing the network of IRL fellows and alumni has always been part of our objectives; however, the importance and utility of these connections has never been made so critical. We will increase our effort in fostering the IRL communication network, and create opportunities for cross-cohort interest groups, IRL social media, and knowledge-sharing hubs.
New knowledge development. The new era is also highlighting the need for new and modified research and evaluation methods and techniques, such as remote/online qualitative interviews, alternative data collection plans, responsive and rapid evaluation, and building digital (or hybrid) communication networks. Rigor in these methods is yet to be developed and tested, and we acknowledge this as a critical need in interdisciplinary research.
Challenging the long-standing power imbalance in research-community relationships. Researchers and their institutions hold traditional power in ways that community-based organizations and marginalized populations do not. This shows up in language, other communication media, funding, time management, and decision-making. This long-standing power imbalance is one of the main reasons research agendas have been prioritized over community needs and priorities. We have and will continue to stand by a clear, explicit focus on challenging this power dynamic, so that we will move away from the status quo and towards achieving an authentic, inclusive, and sustainable culture of health.