By: Joslyn Cassano | Published: August 17, 2022
In September 2020, while the COVID-19 virus claimed hundreds of lives each day in Florida according to data provided by the Centers for Disease Control and Prevention (CDC), a statewide coalition funded by the NIH centered its efforts on underrepresented groups that bear the brunt of the pandemic’s impact.
“We were seeing the disproportionate toll COVID was taking on minority communities,” said Olveen Carrasquillo, M.D., M.P.H., FL-CEAL contact principal investigator and Co-Director of the Miami Clinical and Translational Science Institute (CTSI). “The vaccine trials were ready, and it appeared minorities were not going to participate due to mistrust.”
The Florida Community Engagement Alliance Against COVID-19 Disparities (FL-CEAL), which is supported by the Miami CTSI, brought together six institutions across the state to conduct community-engaged research focused on COVID-19 awareness and education.
Dr. Carrasquillo, who is also Co-Director of the CTSI’s Community & Stakeholder Engagement Program, said the coalition’s biggest concern at the time was vaccines would be developed without the inclusion of minorities, resulting in the inability to show if the vaccines were effective in communities where the risk profile is different than the general population.
“It was a big push to learn about the barriers, and then come up with ways to overcome them,” says Sheela Dominguez, Miami CTSI Executive Director of Strategic Operations. “It’s been satisfying to give a voice to people who haven’t historically had a voice.”
In South Florida, communities disproportionally affected by COVID-19 include rural agricultural areas, urban low-income areas, LatinX sexual/gender minorities, and black and Haitian low-income residents.
Alongside partners from Florida International University, the University of Florida, Florida A&M University, Moffitt Cancer Center, and Health Choice Network, the University of Miami team leveraged longstanding community partnerships to better understand people’s deepest thoughts and fears driving behaviors related to the virus, and to ensure their inclusion in COVID-19 health studies.
“Despite the prevailing idea that some people are just closed off to information and have already made their decision one way or the other, we’ve seen that people in the community are more receptive to information than ever. — Victoria Behar-Zusman, Ph.D., Associate Dean for Research at the University of Miami School of Nursing and Health Studies.
The FL-CEAL team prioritized, above all else, maintaining the hard-won trust built over years of working within its vast network of community partners. “There was a respect there that I thought was really unique to CEAL,” said Dominguez.
Early research from FL-CEAL showed engaging local community health workers to conduct outreach helped increase participation of minorities in clinical trials. As a result, a COVID vaccine hesitancy curriculum was created and used to train more than 540 community health workers in Florida, and hundreds more in California and Texas.
“The issue of getting vaccinated is not black and white,” said Victoria Behar-Zusman, Ph.D., Associate Dean for Research for the University of Miami School of Nursing and Health Studies. “Community members want to do right by their families, but with so much mixed messaging and the everchanging picture of the virus, the information is hard to decipher. Despite the prevailing idea that some people are just closed off to information and have already made their decision one way or the other, we’ve seen that people in the community are more receptive to information than ever.”
FL-CEAL organized more than 250 outreach activities including panel discussions, webinars, targeted media outreach, and in-person vaccination education events. Faith-based leaders including a priest in Little Haiti and a Catholic bishop in Chicago hosted radio programs and webinars and held meetings to answer questions and address community concerns through a spiritual framework. “It was messaging I, as a doctor, would never have been able to do,” said Dr. Carrasquillo.
To target Latinx sexual and gender minorities, who are disproportionately affected by COVID-19, FL-CEAL investigators worked with trusted community organizations to conduct outreach events at Gay Ocho, the largest Latino-focused pride event in the United States, Miami Beach Pride, and at LGBTQ venues across Miami.
“We wanted to speak directly to community members who were vaccine hesitant and provide them with the resources they need to make an informed choice,” said Nicholas Metheny, Ph.D., M.P.H. RN, Assistant Professor at the University of Miami School of Nursing and Health Studies and a Co-Investigator of FL-CEAL. “By creating an online resource guide targeted specifically to the Latinx LGBTQ community, FL-CEAL has been instrumental in ensuring this community has the resources needed to combat misinformation and keep themselves safe.”
One of the greatest accomplishments of the FL-CEAL team, according to Dr. Carrasquillo, was successfully increasing minority participation in the vaccine trials. Combined, FL-CEAL outreach efforts led to more than 60 percent minority participation in COVID-19 vaccine trials conducted by Moderna and Johnson & Johnson.
When data revealed the effectiveness of the vaccines for minority groups, FL-CEAL shared this news. “We are glad to be here as a trusted source of information, particularly for the minority communities where we have a long track record of engagement with,” said Dr. Carrasquillo.
With funding through March 2023, the FL-CEAL coalition has turned its attention to promoting pediatric vaccines, and booster shots for all. “It’s irrefutable, kids should be vaccinated. Every day a new study comes out showing this,” said Dr. Carrasquillo.
Though great strides have been made, challenges persist, he says. “COVID is still killing people, and a lot of people just don’t want to talk about it. That makes messaging difficult. But we are still going to work with our community partners to get the message out using as many different venues and different multi-channels of communication as possible. We’re still going to continue.”