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Understanding perceptions and barriers to clinical trial participation in multicultural communities

Ethan Paul Royka, Chase Shipp, N. Nguyen, P. T. Naing, Juliet Meir, Arsalan Boodhun, M. Ravichandran, S. Jones et al.

Journal of Clinical Oncology, 2026

Abstract

e13502

Background:

Racial, ethnic, and linguistic minorities remain underrepresented in clinical trials. While structural barriers to enrollment are well documented, patient perceptions and cultural factors influencing participation remain understudied. This study aims to assess patient perceptions and barriers to trial participation and identify community engagement opportunities.

Methods:

A 46-item cross-sectional survey of adult patients and caregivers was verbally administered at Northwell Cancer Institute at Rego Park and assessed demographics, perceptions of clinical trials, motivating and hesitating factors influencing trial participation, and community characteristics. Open-ended responses were thematically analyzed. Likert-scale ratings ranged from 1 (not at all important) to 5 (very important) and were analyzed quantitatively via descriptive statistics. Group comparisons were evaluated using χ² tests.

Results:

A total of 158 surveys (136 in English) were collected from June to August 2025. Respondent demographics are reported in Table 1. Knowledge of the term “clinical trial” varied, with 22% unable to define the term. Common motivators for trial participation included physician recommendation, quality of life improvement, and immediate health benefits. Frequently cited hesitations included uncertainty about treatment outcomes, side effects, and fear of being treated as a “guinea pig.” Among Likert items, shared language with care team (mean score = 4.5) and…

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