Citizen science project explores causes, solutions to COVID-19 vaccine hesitancy

A Black woman is the recipient of a COVID-19 vaccine, injected into her left arm.

In early 2021, COVID-19 vaccinations in the U.S. were limited by challenges of supply meeting demand, but a few months later, supply began to outstrip demand as adult vaccinations in the country leveled off.

Vaccine hesitancy is not a new phenomenon, but the drivers behind COVID-19 vaccine hesitancy are of newfound importance for public health leaders as states and communities move toward full re-opening.  With funding from the Centers for Disease Control and Prevention’s Prevention Research Centers, the UIC School of Public Health is launching a project to better understand the multi-faceted causes of vaccine hesitancy across different communities and the best interventions to improve vaccine confidence and uptake.  The project, with SPH’s Policy, Practice and Prevention Research Center, engages the help of citizen scientists, or individuals from different communities who will help to shape research questions, collect and analyze data, and advise on how to disseminate the results.

“Citizen scientists are closer to the community and can help to shape the research questions we’re asking,” said Emily Stiehl, PhD, clinical assistant professor of health policy and administration and co-principal investigator for the project.  “COVID has changed people’s access to data, and if we can give people tools to use that data and make decisions, that will make public health stronger than in the recent past.”

The project aims to increase vaccine confidence in communities that have been disproportionately affected by the pandemic.  Community-based organizations (CBOs) that serve two predominantly Black, three predominantly Latinx and one Orthodox Jewish community in Chicago and one White rural county in Illinois will be highlighted.  These communities have all experienced barriers to vaccine confidence and uptake.

The project includes evaluation of outreach activities at the individual and organizational levels.  Two members of each organization will participate in the School’s new citizen scientist certificate program to build research skills.  They will then distribute surveys to community members, conduct a community forum and lead focus groups with outreach workers from the different communities.

At the organizational level, CBO engagement aims to build organizational capacity.  The research team will conduct interviews with CBO leaders concerning the specific issues of hesitancy they are confronting, the capacity of CBOs to address hesitancy and their ability to conduct similar evaluations in the future.  One goal is to develop a strong public health infrastructure, that can better align CBO efforts with local health departments on reporting, feedback and supporting policy decisions.  For now those efforts might focus on vaccine dissemination, vaccine sites, and messaging, but similar methods could be used in the future to address other health challenges facing these communities.

One of the key challenges with COVID-19 vaccine hesitancy is that there are multifaceted reasons why people might be hesitant.  Some communities might not trust the vaccine because of negative historical interactions with health-related research.  Some may lack access to vaccine distribution sites, and others might believe that COVID-19 is not a serious health risk.  This project will help researchers at the School of Public Health understand these different drivers of vaccine hesitancy and develop better targeted interventions and messages for improving vaccine confidence and uptake across the region.

The CBOs across Chicago include the West Side Health Authority, Instituto Del Progresso Latino, Envision Community Services, the Puerto Rican Cultural Center, Community Assistance Programs and Community Counter.  The rural evaluation work will include collaboration with the Stephenson County Health Department, in collaboration with the University of Illinois College of Medicine Rockford.

“[Before the pandemic], there was a disconnect between research and community engagement,” said Sage Kim, PhD, associate professor of health policy and administration and principal investigator for this project.  “We have learned that we need the community to play a role in all aspects of research, or it would be impossible to handle this pandemic and other public health concerns.”

Collaborators on the project

UIC School of Public Health

  • Wayne H. Giles, MD, MS, dean of the School of Public Health
  • Robin Mermelstein, PhD, director of the Institute for Health Research and Policy
  • Ronald Hershow, MD, professor of epidemiology
  • Sanjib Basu, PhD, Paul Levy and Virginia F. Tomasek Professor of Biostatistics
  • Alexander Gutfraind, PhD, research assistant professor of biostatistics
  • Jeni Hebert-Beirne, PhD, interim associate dean for community engagement
  • Brenikki Floyd, PhD, associate professor of community health sciences
  • Preethi Pratap, PhD, research assistant professor of environmental and occupational health sciences
  • Guddi Kapadia, assistant director of the Policy, Practice and Prevention Research Center

Other partners

  • Manorama Khare, PhD, research associate professor at the UIC College of Medicine Rockford
  • Ashley Hughes, PhD, assistant professor of biomedical and health information sciences at the UIC College of Applied Health Sciences
  • Catherine Carow, founder and president of Carow Consulting and adjunct faculty with SPH’s Executive Master of Healthcare Administration program