Northeast Ohio is known for the quality of its health care,
from top hospitals and research facilities to medical education.
However, it's long been acknowledged that not everyone has equal access to those resources — including not being represented in research affecting patient medical care.
One local effort to increase local minority participation in research is the Clinical and Translational Science Collaborative (CTSC), which includes Case Western Reserve University, Cleveland Clinic, University Hospitals, MetroHealth, the Louis Stokes Cleveland VA Medical Center, as well as University of Toledo and Northeast Ohio Medical University in Rootstown, approximately 20 miles east of Akron.
The CTSC's recent work has emphasized community engagement, said Dr. Grace McComsey of University Hospitals, who directs the collaborative.
“We're establishing relationships, I would say, building trust with community organizations as well as the people they serve so we can increase representation in clinical trials," McComsey said. "As well, we're doing projects, research projects on the ground to try to help and improve the health and participation and research of these populations."
The CTSC has been in place since 2007, but only last year started focusing on engagement through the formation of a citizen advisory board that connects medical professionals to minority communities.
The advisory board includes representatives from the Black, Hispanic and LGBTQ+ communities, among others. A historic mistrust of medical research has led to low participation rates among those groups, said Gelise Thomas, director of research health equity at Case Western Reserve University. The result is treatments that do not address minority populations' needs, she added.
“We don't have the diversity that we desperately need to see reflected in clinical trials," Thomas said. "And therefore, when these drug interventions are out on the market and integrated into health systems, we don't know how to work on an African-American man who's over 65.”
Given the strength of Cleveland's healthcare system, equity should be expected, she said.
“Cleveland, we're arguably the health care capital of the world," Thomas said. "We should be on the forefront of innovation and be strategically planning for this uber-inclusive environment where health equity is not just a goal, but it is the North Star.”
Representation leads to funding
Beyond increasing participation in clinical studies, the CSTC's citizen advisory board is meant to help minority communities obtain funding to address their own health concerns. For example, the collaborative partnered with HOLA Ohio on research exploring how certain environmental factors, such as dust and pesticides, harm the lungs of Hispanic migrant farm workers. Initial research found one-third of workers reported harm to their lungs from this exposure, said Veronica Dahlberg of HOLA Ohio.
"This is a very important partnership so that we can make sure that our community also has access to some of the most cutting edge treatments and interventions," Dahlberg said. "So, that could be potentially life saving for them."
The collaborative is continuing to provide funding for community-based health studies and technical support to apply for them, including grant writing support.
However, Dahlberg said efforts such as the CTSC are just the beginning.
"There is a lot of mistrust in our community that has to be overcome and that will take time and that takes relationships," she said. "It takes people like me to be kind of liaisons between the (collaborative) members and the Latino community."
McComsey agreed building trust will be a long-term effort.
“People who tell me, 'Are you going to change the health inequities in the area in a year or two?', you know, you laugh," she said. "This is a very complicated problem.”
Building trust requires not only time but consistency, Gulnar Feerasta, managing director of the LGBT Community Center of Greater Cleveland, said.
“Show up more than once a year for Pride," Feerasta said, adding that progress comes from "consistently building that trust to the point then when these opportunities for research pop up or other types of partnership, then it's a matter of picking up the phone and calling the contact and saying, 'Hey, I have this opportunity. What do you think?'"
Community members and researchers also need to be on equal footing for trust to be established, Feerasta added.
"There has to be this ongoing two-way dialog," she said. "It has to be an equal partnership where you're doing as much as you can to intentionally center the community rather than leaning on the status quo."
