The University of Kentucky Markey Cancer Center has uncovered a significant linguistic barrier to clinical research participation, finding that the term "clinical trial" itself may be deterring potential participants, especially among minority communities.
Terry L. Keys, research advocacy manager at the Markey Cancer Center, shared insights from their patient advisory group's findings, highlighting how seemingly neutral terminology can carry heavy cultural and historical baggage. "When you belong to a population who doesn't trust the judicial system, why would we ever want to be part of something called a trial?" noted Merlene, a Black former newspaper columnist and advisory group member.
Understanding Patient Misconceptions
A primary concern among potential participants is the misconception about treatment protocols. Many patients incorrectly believe they might be denied standard treatment as part of a clinical trial. "They still think that you either get the medication or you don't get the medication," Keys explained. "They're not understanding that you get the standard of care, and then the question is whether or not you get the extra thing."
Enhanced Care Benefits
Contrary to patient concerns, participation in clinical research often provides additional benefits. Keys emphasized that research participants receive what he terms "enhanced care," including:
- More frequent medical oversight
- Additional diagnostic scans
- Extra monitoring at no additional cost
- Standard treatment plus potential experimental interventions
Shifting the Narrative
The research team's linguistic analysis revealed that the word "trial" carries multiple negative associations, including:
- Trial by fire
- Trial by jury
- Trial by judge
"It's just fraught with all kinds of things that are not good," observed Merlene, prompting the center to reconsider its terminology. The institution is now actively promoting the use of terms like "clinical research" and "clinical studies" instead of "clinical trials" to improve patient engagement.
Building Trust Through Communication
The Markey Cancer Center's initiative demonstrates how healthcare institutions can better serve diverse populations by being mindful of language choices. This shift in terminology represents a broader effort to address historical mistrust and improve access to cutting-edge medical research across all communities.
Keys emphasized that successful patient recruitment requires addressing both practical concerns about treatment protocols and deeper cultural sensitivities that may influence participation decisions. The center's approach focuses on clear communication about the enhanced care model while being mindful of language that might unintentionally create barriers to participation.
