Open Access Journal of Clinical Trials (Dec 2024)
Understanding the Practical and Psychological Barriers to Clinical Trial Diversity and Accessibility
Abstract
Kristin L Parkhurst, Amy Froment Global Trial Optimization, Regeneron Pharmaceuticals, Inc., Tarrytown, NY, USACorrespondence: Kristin L Parkhurst, Regeneron Pharmaceuticals, Inc., 777 Old Saw Mill River Road, Tarrytown, NY, 10591, USA, Tel +1-914-847-8795, Email [email protected]: It is crucial to have diverse trial populations to assess the effectiveness of treatments in different patient groups. The purpose of this analysis was to investigate the motivations and barriers to clinical trial participation of potential patients and provide possible solutions to removing these barriers.Patients and Methods: Participants across nine countries, with a variety of ethnic and gender identities, sexual orientations, and socioeconomic backgrounds were included. Potential participants were alerted to the survey via an awareness campaign which included a link to a landing page providing additional information, and the opportunity to sign consent and complete a survey. Survey questions were written to explore how culture, identity, and background influence participant attitudes toward clinical trials. Input into question format was sought from a cross-functional, international team.Results: A total of 3858 participants “true completers” completed all questions in the survey. Of the “true completers” 72.5% of participants said that they would be willing to participate in a clinical trial, but only 23.9% of participants had done so before. The most common barrier to participation was fear of side effects (42.1%) followed by lack of knowledge of clinical trials (23.1%). Financial barriers were also identified, including “potential travel costs” (27.8%) and “a lack of financial compensation apart from travel costs” (24.4%). Survey respondents from minority groups showed a high willingness to participate, with 69.9% of participants who identified as women, 72.7% of LGBTQ+ participants and 96.1% of Black participants expressing an interest in participating in a clinical trial.Conclusion: This survey suggested that insufficient trial enrollment is due to the presence of barriers, rather than an absence of motivation to participate, and should be used to inform new strategies for increasing the diversity of patient populations in clinical trials and making trial participation more widely accessible.Keywords: survey, motivations, socioeconomic, LGBTQ+, gender, race
