Stigma Monitoring and Response System for Public Health Crises
Overview
Project REFOCUS (Racial Ethnic Framing of Community Informed and Unifying Surveillance) worked to refine and expand the use of a community-level crisis monitoring and response system (CMRS) intended for communities to identify stigma signals during the COVID-19 pandemic and future public health crises that create barriers to recommended mitigation practices (e.g., vaccine uptake) and respond to them in real-time. Initiated in December 2021 during the COVID-19 pandemic, Project REFOCUS explored drivers behind the disproportionate impact of the pandemic on historically marginalized and/or racialized populations confirming a clear need for an approach to emergency responses that recognizes and addresses those drivers.
The Project concluded in July 2024, after piloting the CMRS in six sites. Strategies include:
- Exploring opportunities for the expansion of data collection systems—including nontraditional and qualitative information—to more effectively monitor, in real-time, the impacts of social stigma on the population as it affects mitigation and prevention practices for public health crises.
- Developing model communication materials and recommendations, including social listening, for responding in real time to findings from stigma monitoring systems and signals from specific communities (including the presence of toxic stress).
- Leveraging and empowering community-based efforts and organizations by providing tools, technical assistance, and education to essential and frontline workers (e.g., community health workers, pharmacists, social workers) who work in, live in and represent the communities disproportionately affected by COVID-19 and other public health crises.
- Engaging media outlets and local journalists to share best practices for delivering messages that center the community's views and reduce social stigma.
What is the Community Monitoring and Response System (CMRS)
The CDC Foundation, in partnership with the CDC’s Office for Health Equity, partnered with the University of California Los Angeles and Howard University to develop and pilot the Project REFOCUS CMRS conceptual model. The model calls for ongoing guidance from a community advisory board (CAB) with direct access to persons disproportionately impacted by public health crises like COVID-19. The CAB helps identify quantitative and qualitative data that defines barriers to public health mitigation recommendations, including social/structural determinants of health and emerging community stressors (or signals) that dominate community concerns. This information instructs appropriate, community-sensitive responses (e.g., education, services).
In implementing the CMRS, six pilot sites (listed below) aimed to identify strengths, challenges, and needed improvements for broader use; identify, develop, and share community success stories, including those that highlight recovery and resiliency; and provide insights that might expand the utility and uptake of the CMRS for other communities during public health crises. Given the importance of communities in defining and understanding how to best address their own needs, each pilot site adapted the CMRS model according to their needs.
Albany, Georgia – Mt. Zion Community Reinvestment Corporation
As a partnership between Mt. Zion Community Reinvestment Corporation and Phoebe Putney Health Center with guidance by their representative community action board, Albany’s CMRS is being built around an initial survey/needs assessment related to experiences in the community during the COVID-19 pandemic. The survey focused on health equity issues and aimed to assess current community status, prior experiences during the height of the COVID-19 pandemic and general issues related to social and structural determinants. It provides a baseline understanding of the community’s lived experiences during the pandemic and a platform for further research and funding. The project staff have also conducted interviews in the community to collect stories and personal experiences with the pandemic, further lending voice to the community. Based on the data and as part of this project, a documentary, Unmasking the Truth, was produced. This documentary pulls out social and structural issues that led the city to be one of the hot spots for inequities related to COVID-19 at the height of the epidemic.
For more information, please contact Dr. Dianna Grant dgrant@phoebehealth.com or visit www.mtzioncrc.org.
Bronx, New York – Urban Health Plan
The Bronx/Urban Health Plan’s CMRS is guided by a Hunts Point & Longwood Community Coalition (HPLCC) subgroup. This community advisory group (CAB) meets monthly to monitor community challenges addressing public health crises and recommends policy and practice responses. They aim to build collective action to advance advocacy and policy change at the neighborhood level to address racial disparities and lack of resources. In constructing a data dashboard for this project, the CAB identified five non-traditional data elements to help identify barriers to public health implementation in their communities: housing stability, food insecurity, employment, asthma and car accidents/collisions. From data and deliberations of the CAB, the HPLCC implemented a community-based COVID/flu vaccine campaign to respond to low vaccination uptake and high rates of COVID and flu, especially among senior citizens and young adults. Scheduling pop-up vaccine centers after hours and on weekends in accessible locations resulted in over 2,500 persons receiving vaccines within a few months. These services also facilitated the ability to elicit stories and comments from the community that help illuminate challenges and opportunities for more effective interventions. In another case, informed by the work of Transportation Alternatives’ Spatial Equity NYC, the HPLCC learned that their community ranked 1st out of 59 community boards for traffic fatalities and decided to use open-source data to set up a system for tracking severe injury crashes. Based on learning of the disproportionate number of traffic accidents in the area, they worked with elected officials to advocate for changes in the community traffic patterns to lower the risk of accidents.
For more information, contact Jaime Torres Jaime.Torres@urbanhealthplan.org or visit https://www.urbanhealthplan.org/.
Detroit, Michigan – Wayne State University HEAL
Coordinated by Wayne State University’s Hub for Evaluation and Learning (HEAL), Detroit adopted a Crisis Monitoring and Response System (CMRS) model that is integrative rather than linear as it manifests through overlapping activities related to capacity building, community engagement and qualitative data gathering. Their Community Steering Committee (CSC) chose to focus on Detroit-area immigrant and refugee communities by initially increasing community capacity in critical areas to respond to future public health crises. They have trained community members as community health workers (certified and reimbursable through MI Medicaid), Mental Health First Aid trainers and certified Arabic language translators. The trainees, along with CSC members, are well placed to listen directly to the community to understand their challenges and experiences. Their learnings are intended to help facilitate messaging and instruct responses to community needs beyond traditional data collected through mobilizing public health efforts.
For more information, contact: Tricia Miranda-Hartsuff triciamh@wayne.edu or visit https://s.wayne.edu/heal/.
Helena, Arkansas – Delta Circles
Coordinated by Delta Circles, the Crisis Monitoring and Response System (CMRS) model in Helena integrates community outreach, data collection and response with community health workers (CHWs) at the core of the system. The approach was conceptualized and is guided by a community action board that meets regularly. Considered trustworthy by the community, CHWs recruited over 200 community members to participate in Project REFOCUS with whom they stay in touch to monitor and respond to their needs. To achieve the aims and goals of Project REFOCUS, Delta Circles partnered with the Healthy Communities Initiative (HCI), a novel, place-based, proactive engagement model that links individuals in low-resource communities with local social and medical services. HCI is domiciled at East Carolina University (ECU). Delta Circles uses a local data collection program called RedCap, which has been used by CHWs to capture quantitative and qualitative data on chronic and emerging social and structural problems. During the pilot phase, the Community Action Board (CAB) prioritized cardiovascular health as a chronic challenge and designed cooking/nutrition and fitness classes as a response. They also faced a severe water shortage, which needed to be prioritized before other public health interventions could be effective. The CMRS had established a community-driven system that identified and supported a response to this crisis because it created a barrier to any other interventions that might be introduced in the community.
For more information, contact Patricia Ashanti patricia.ashanti@gmail.com or visit https://delta-circles.org/.
San Antonio, Texas – University of Texas at San Antonio (UTSA)
With the goal of uplifting community voices in prioritizing their needs and concerns, UTSA partnered with San Antonio for Growth on the Eastside (SAGE) to conduct a series of community-centered discussions and focus groups aimed at gathering critical insights from Eastside residents and/or workers about their experiences before, during, and after the COVID-19 pandemic. San Antonio for Growth on the Eastside (SAGE) is a 501(c)(3) economic development nonprofit corporation serving the Eastside of San Antonio for over 25 years. Specifically, SAGE supports small businesses, preserves Eastside culture and heritage, and guides growth. Through a guided series of community-centered discussions and focus groups, SAGE gathered critical insights from 20 Eastside residents and/or workers regarding their experiences before, during and after the COVID-19 pandemic. Participants were also asked to reflect on how this period affected their sense of community – drawing a wider perspective on how neighbors, friends, church members, colleagues, business networks and other groups came to support one another.
In addition, interviews with Botánica owners revealed these locations to be critical safe havens for prevention and referrals to affordable care during COVID-19, especially for undocumented populations. Botánicas have long played an integral role in the community ecosystem, serving as cultural cornerstones and healthcare safety nets. Their enduring presence underscores the valuable blend of tradition, healing, and support they provide to diverse communities. Insights were also sought from San Antonio Hispanic journalists, who were considered trusted sources by the community for consistent and reliable information. The Community Action Board (CAB) has played an important role in listening to and interpreting what is learned from all these sources to instruct and drive responses to public health crises.
For more information, contact Rhonda BeLue rhonda.belue@utsa.edu.
Wake County, North Carolina – Shaw University
Guided by their community action board (CAB), which meets weekly, the Shaw University CMRS model is centered around data they collect from local databases as well as a community survey that was released in April 2024, to gauge community perspectives of health equity issues. They have reliable and appropriate quantitative data sources within their community, such as A Better Wake, as well as various mechanisms to collect more qualitative data. During the pilot phase of the project, they interviewed people working in the community, local influential persons and others who shared stories about health and health equity. These sources and the CAB are set up to listen for and respond to emerging barriers in the community to public health recommendations. Community events provide opportunities to reflect on what they have heard in their information collection. They established their own Project REFOCUS website as a hub to collect community input through surveys, find non-traditional quantitative data, and share other information that reflects community voices, such as stories and blogs.
For more information, contact Dr. Dorothy Browne dbrowne@shawu.edu or visit https://projectrefocus.shawu.edu/.
This project: Stigma Monitoring and Response System for Public Health is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $6,978,079.77 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government.
- Centers for Disease Control and Prevention
- United States of America