The Health Equity Research Beyond COVID-19 Series highlights lessons learned when conducting research with marginalized and vulnerable communities during the pandemic, including the importance of authentic, sustained community engagement in health equity research. This post describes one of the embedded research/evaluation projects the Weitzman Institute, an organizational member of AcademyHealth, conducted during the pandemic. The Advancing Health Literacy (AHL) initiative in Waterbury, Connecticut, is funded by the U.S. Department of Health and Human Services Office of Minority Health. The project aims to connect underserved Waterbury residents to health and social services, including medical homes, vaccinations, housing, and food services, as well as educate the community on topics related to health literacy. The City of Waterbury Health Department convened ten community-based organizations who provide a variety of services and engage different populations within the city. These organizations include health centers, a senior center, a church, and other non-profit organizations who work with low-income and communities of color in the city. The City of Waterbury Health Department selected the Weitzman Institute to serve as the research/evaluation partner for the initiative.

Similar to the PCORI-funded, precision medicine patient-centered outcomes research (PCOR) project described in the previous blog post, the Weitzman Institute research team initially planned several key research activities, including site visits and in-person meetings with community-based organizations, to be held in person, which has historically been a successful means for establishing trust and rapport with community members. However, during the pandemic, the research team had to quickly find ways to build relationships with community-based organizations, the majority of whom the team had no prior engagement with until the current AHL initiative.

Normalizing Community Engagement and Health Equity in Research

Community partnerships have long been recognized as cornerstones of community-engaged research and advancing health equity. The Centers for Disease Control and Prevention (CDC) defines community-engaged research as “the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the wellbeing of those people.” There is a strong body of literature highlighting the importance of community partnerships in community-engaged research as such collaborations can facilitate the discovery of innovative solutions to difficult and current community health problems, increase the relevance of research questions and programs devised and implemented, and improve the sustainability, dissemination, replication, and policy impact of the research well beyond the formal study period.

In early 2022, the AHL partners developed work plans that outlined their specific activities that they would conduct as part of the initiative. These activities ranged from hosting and attending community outreach and educational events, sending and receiving referrals for social and medical services, conducting one on one meetings with community members and patients, and attending a monthly Grand Rounds sessions. Members of the evaluation team also worked with AHL partners to revise their work plans during the pandemic to ensure that the intervention and evaluation efforts could still move forward with fidelity, and in such way that was feasible for community partners. Many organizations also hired Community Health Workers (CHWs) to implement the activities listed in their work plans and work with community members and patients. The CHWs have been a critical component of the AHL program as they identify needs, facilitate the referrals process, and provide education on topics related to health and wellness.  Further, the organizations within the AHL program have developed their own partnerships, and increased collaboration through hosting joint events, developing outreach materials, and improved communication to ensure referrals are completed and AHL participants get access to services at other AHL partner sites. Through the project, participating organizations were able to connect with each other, develop an informal communication network, and create opportunities to support each other’s efforts. For example, participating community partners would attend and cross-promote each other’s events. 

Embedding Stakeholders within a Community

One of the main facilitators of success was the caliber of stakeholders engaged in the project, all of whom are deeply embedded and directly engaged with the communities being served, and have a shared commitment to making sure they get their needs meet. Another facilitator of success was consistent communications among participating organizations and willingness to share resources with each other.

Nonetheless, there were several barriers to success. First, the Great Resignation/Reshuffle significantly impacted both the City of Waterbury that was charged with managing the project, as well as the participating community organizations, which had a trickle-down effect on progress of the research. The staff shortages centrally and challenges backfilling positions in a timely manner, subsequently made it difficult for the City to secure signed contracts in a timely manner, support participating partners, as well as hold community organizations accountable for data reporting and meeting expectations. For example, the majority of community organizations were not experienced with data collection, which meant there was a bit of a learning curve with data collection efforts in the current initiative.

Challenges with Virtual Engagement

Presence on virtual meetings does not necessarily equate to engagement. The fact that the evaluation team had no prior relationship with the participating community organizations made it that much more difficult to engage with them virtually. Thus, to conduct research effectively during the pandemic, and even moving forward with the continued use and reliance on virtual platforms, it is important to create time and space for the evaluation team to get to know the participating organizations, their staff, their needs, and reaffirm the importance and value they bring to the research.

Some activities are better done in person. For example, having the research team do a walkthrough of community organizations’ sites can help researchers understand where and how data is collected, and even provide recommendations on how to develop and/or modify existing workflows to be able to facilitate ease with data collection and reporting. Further, there is a general need for understanding that COVID continues to significantly impact communities, including community-based organizations and their operations. As learned during this project, many partnering organizations are still financially recovering from the impact of the pandemic, as well as rebuilding both their team as well as relationships with individuals and families. 

Interested in community-engaged research? Read the other blog post in our series here.

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Committee Member, Member

April Joy Damian, Ph.D., M.Sc.

Vice President and Director - Weitzman Institute Senior Scholar - AcademyHealth

Dr. April Joy Damian is a psychiatric epidemiologist, health services researcher, and classically trained publ... Read Bio

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Brandon Azevedo, M.P.H

Senior Health Policy Analyst - Weitzman Institute

Brandon Azevedo, M.P.H., is currently a Senior Health Policy Analyst at the Weitzman Institute. Over the past ... Read Bio

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