Reflections on the Importance of Community-Partnered Research Strategies for Health Equity in the Era of COVID-19

Abstract

Objective.

In the face of coronavirus disease 2019 (COVID-19) physical distancing mandates, community-engaged research (CER) faces new vulnerabilities in the equitable inclusion of communities within research partnerships aiming to address these very inequities.

Methods.

We convened a series of virtual meetings with our CER partnership to discuss the current state of activities and to identify considerations for remote community engagement. We outlined and expanded recommendations through iterative, partnered discussions to inform protections against new CER susceptibilities.

Results.

This article presents CER recommendations in translational COVID-19 research for health equity, including increasing accessibility for remote engagement, promoting opportunities for bi-directional knowledge exchange, committing to a community-centered workforce, and leveraging novel opportunities within community-academic partnerships.

Conclusion.

Researchers conducting CER face an opportunity to reimagine community engagement remotely for partnered resilience to ensure the voices of the most affected are appropriately and inclusively integrated into all aspects of decision-making within the COVID-19 research, practice, and policymaking continuum.

A primary goal in the evolution of translational health research is to ensure the ever-increasing new treatments and advancements in care reach all patients.^1,2 Community-engaged research (CER) has long been recognized as a critical approach to generate partnered health solutions for under-resourced communities to implement and disseminate new knowledge.³ However, CER revolves around and thrives on continuous relationship-building by being present or embedded in communities, a process that historically has been done in person.⁴ The coronavirus disease 2019 (COVID-19) outbreak and associated physical distancing mandates disrupted many elements of the CER process, revealing vulnerabilities within community-academic partnerships, and shedding light on the disparities and inequity CER aims to address. COVID-19 hospitalizations and deaths have disproportionately affected low-income minority communities, in part through chronic medical conditions such as hypertension, diabetes, obesity, kidney disease, cardiovascular disease, and chronic lung disease^{5, 6} and in part through historical inequities rooted in structural racism.⁷ The convergence of COVID-19 and these racial/ethnic and social inequities reinforces the critical role of CER in improving the social determinants of health for our communities.

Priorities within academic institutions are rapidly shifting, as schools design new COVID-19 protocols and research studies; modify existing research protocols; face changes in clinical, teaching, and professional service responsibilities; and anticipate substantial fiscal shortfalls. At the same time, community partners, many of whom serve the most vulnerable, are overburdened with increased needs for existing clients, the anticipation of a dramatic rise in new clients with diverse needs, inadequate resources, and disrupted funding streams. These challenges have the potential to erode years of gains in CER. Community partnerships can help us develop adaptive, innovative engagement strategies to ensure the most disadvantaged and disconnected populations are not excluded from research—as partners, stakeholders, or study participants.

The COVID-19 pandemic has put a halt on in-person CER research activities and has simultaneously exposed glaring “holes in the safety net,” inflicting a double blow to CER teams and the stakeholders who serve the most vulnerable. Fittingly, CER strategies may not only help partners understand and intervene upon these research disruptions; they may also help us to reimagine and reconfigure research in the safety net. We convened a series of virtual meetings with our CER partnership to discuss current activities, modifications, strategies, and considerations for community engagement from a distance. The initial meeting was held with five academic faculty and staff and four community partners to discuss the early impact of the COVID-19 pandemic on community stakeholders. Through iterative partnered sessions, we subsequently outlined and expanded considerations and guidance for remote community engagement. Herein, we describe new opportunities for community-academic partnerships and call for the promotion of the community voice in emerging and urgent COVID-19 translational research.

1. Ensure community engagement in emerging COVID-19 research protocols and priorities. Remote community engagement presents new challenges for equitable decision-making and inclusive power-sharing in partnered research. As researchers scramble to modify existing study protocols or establish new COVID-19 research protocols, they may neglect to include the community as they make these decisions. There are many legitimate reasons for not including the community in these decisions—among them the rapid pace of the changes, competing priorities in a completely altered landscape, and fear of placing an additional burden on already overwhelmed partners and stakeholders. However, community participation in emergent decision-making for COVID-19 research not only enhances the relevancy of the research to the community but ensures accountability and a foundation for trust to improve the implementation of and relevancy of study findings.

2. Focus engagement on disproportionately affected communities for early identification and response to disparities. Initial incomplete COVID-19 public health data resulted in the inadequate determination of the most affected communities, differences in health outcomes of disease, and general misinformation. Early engagement allows for appropriate inclusion, implementation, and dissemination to communities most likely to face poor health outcomes related to underlying health disparities, a lack of access to proper care and information, and limited resources. The voices of those most affected, as community witnesses, are of vital importance to research probing barriers to care, social needs, and behavioral norms.

3. Practice honesty, humility, and humanism in newly remote partnered research activities. Partnered research teams need to place a new focus on intra-project support for the teams, emphasizing life-work balance, allowing room for change and flexibility, and lifting up those most immediate to the work to ensure continuity of the work. A recurrent suggestion was to devote time to asking about new short and long-term needs to incorporate into planning. Where partnership expectations and project goals may have to adapt, focus on the desire to learn together in continuing work. Learning how to collaborate remotely is a new, imperfect process, and any progress should be celebrated. Humor, empathy, the sharing of lived experiences, and humanism has historically built resilience through in communities facing oppression,^{8, 9} and can build team cohesion in the face of change.

4. Support and create opportunities for bi-directional knowledge exchange. Distancing presents an opportune time for increased bi-directional exchange of information, emerging data, interpretation of findings, and potential strategies to deal with a crisis, even among those who are in most need after the loss of employment. Community partners can provide community expertise, historical context, and insight into local needs, resources, and assets. Strategies to obtain this information (e.g., storytelling, photovoice, etc.) can provide rich, relevant context to interpret occurrences, behaviors, and beliefs to inform community-relevant interventions, policy, or programs. Academics, in return, can share the latest information to prevent COVID-19 exposure, provide technical assistance and training, and share university resources.

5. Maintain commitment to a community-based health and research workforce. Health professional training will require educational programming to connect-back to the community in multiple ways. This is an opportunity to support a community-centered health and research workforce (such as the hiring, development, and training of community health workers, promotoras, or lay health workers) to conduct and inform trusted, accessible, informative, safe, and culturally congruent encounters related to COVID-19 prevention, research, and care.

6. Ensure accessibility in engagement. Remote engagement may provide an opportunity to include additional community partners who previously would not have access to travel to meetings or access information. However, access to technology for remote engagement (internet, smartphones, computers or tablets, software, etc.) may be limiting factors. Creative ways to disseminate information and expand engagement remotely may include circulating meeting transcripts or summary points, providing additional resources, reading material, contact information, or recordings, publishing events and updates in local ethnic media, and engaging with local community leaders. Such activities can allow those with conflicting schedules, limited access, or caretaking responsibilities to participate and provide input asynchronously.

7. Include funding for community participation in emerging COVID-19 research. Many new COVID-19 research opportunities should explicitly include a funded role for community engagement. Investigators should support community-led applications and share funding and other resources in academic-led proposals with the community as full partners by including them in the study concept and design, budgetary decisions, and analytic and dissemination approach.¹⁰

Community-academic partnerships are critical in times of crisis. During emergencies, these partnerships can be leveraged to enhance health surveillance, response, recovery, social resilience, and adaptive capacity, which ultimately strengthen the health system’s response to further outbreaks.^{11, 12} COVID-19 will only increase gaps in health outcomes and societal issues. Amidst this crisis, we have an opportunity to leverage CER to influence health policy decision-making to re-design a way forward, creating an equitable future for the most vulnerable in our society, and fulfill a promise America has yet to keep for all of its citizens.