Abstract: What Influences Trust in and Understanding of Clinical Trials? An Analysis of HINTS

◆ Aurora Occa, University of Kentucky
◆ Allison S. Merritt, University of Kentucky
◆ Allison Leip, University of Kentucky Markey Cancer Center
◆ Jerod L. Stapleton, University of Kentucky Markey Cancer Center

Clinical trials are essential in modern medicine to compare and evaluate new treatments and medical procedures. Despite their importance, several barriers prevent patients from joining clinical trials, further exacerbating societal disparities in healthcare access. These barriers operate at multiple levels, including: systemic, contextual, individual, and interpersonal. Current evidence suggests that communication research and interventions can help mitigate or remove some barriers and improve equity in accessing clinical trials. In this study, we focused on two individual and interpersonal level barriers: poor trust and low knowledge perceptions. Research indicates that certain groups within the society lag behind compared to others in knowledge access (knowledge gap hypothesis) and that different modes of knowledge acquisition influence this gap. Therefore, in this study, first, we measured differences in perceptions of trust and knowledge about clinical trials by sociodemographic factors. Second, we examined how differences in trust and knowledge varied depending on whether individuals used information technologies or online resources (ICTs) to seek health information, discuss with their healthcare providers, and make health decisions. We analyzed data from HINTS 5 Cycle 4, collected from February through June 2020. Prevalence estimates and analyses were weighted to correct for nonresponse and noncoverage biases using Complex Samples in SPSS Version 26 (Westat, 2020). Associations between each correlate and the outcome variables (knowledge perceptions and trust) were first examined with unadjusted (bivariable) logistic regression models. The analysis of this publicly available data was approved by the authors’ university IRB (# 67898). When focusing on knowledge, data indicated that 41.3% of participants perceived that they didn’t know anything about clinical trials, 49.3% perceived knowing a little, and 9.4% perceived knowing a lot about clinical trials. These results were similar for males and females, but differences were observed for some racial/ethnic subgroup comparisons and for individuals with lower income. When focusing on the most trusted sources, 73.6% of participants indicated they most trusted providers, 19.4% indicated health organizations, and 7.1% indicated social support. Hispanic participants were more likely to trust health organizations over providers. ICTs variables showed to play an important role. Knowledge was higher among those who used the internet to look for, seek, or discuss health-related information. Trust in health organizations compared to health providers was higher among those who used the internet to look for health-related information. Trust in social support was significantly higher among those who used ICTs. Future interventions should strive to provide informational and educational resources for the general population about clinical trials and medical research. It would be important to develop dedicated resources for specific groups. Links and information may need to be distributed through social media to facilitate patients in identifying available clinical trials through governmental websites and other official channels. These materials should be designed to consider both the information needs of patients and the social dynamics happening online. Considering the important role of trust and online behaviors, healthcare professionals should focus on creating a dialogue rather than a top-down form of communication about clinical trials and participation in medical research.