Abstract PS3-02-26: Using a plain language tool to overcome barriers to research participation by people with inherited cancer risk

Abstract Background: Only 7% of adult cancer patients enroll in treatment-related clinical trials, with even lower rates for genetics and quality-of-life studies.1 People with germline mutations are interested in participating in hereditary cancer research, but few are being offered the opportunity by their healthcare team. In a FORCE survey, only 14% of people at high risk for breast cancer reported hearing about clinical research opportunities from their healthcare providers, while 75% expressed interest.2 Dedicated efforts are needed to ensure that the hereditary cancer community is aware of clinical research opportunities. In 2020 FORCE surveys, 46% of oncology nurses and 55% of certified genetic counselors identified research jargon and health literacy as major barriers to clinical trial referral.3,4 FORCE and other members of the "Consistent Testing Terminology Working Group" found large gaps in patient understanding of commonly-used cancer research terms.5 In focus groups, FORCE asked women with or at high risk for hereditary breast cancer to review a cancer study listing on ClinicalTrials.gov. All agreed that the study description was difficult to understand due to complexity and jargon and that Clinicaltrials.gov required a lot of practice to use.6 Methods: In 2014, FORCE built a tool to help hereditary cancer patients find, understand, and enroll in relevant studies. The tool consists of a custom database with plain-language summaries of research studies relevant for people with inherited cancer risk. Users can search for studies listed in the FORCE database as well as on ClinicalTrials.gov by study type, cancer type, gene or biomarker, study location and key word. FORCE evaluated the tool through focus groups and a user survey. Focus group participants were asked to compare the ClinicalTrials.gov listing with the FORCE plain-language version of the same study. Results: Focus group participants all agreed that the FORCE listing was clearer and easier to understand than ClinicalTrials.gov.6 Key user survey results are included in Table 1. Of the respondents, 79% found the tool easy to use, 84% would use it again, 79% would refer others to the tool. Of respondents, 36% enrolled, and 43% planned to enroll in a research study. Conclusions: People with inherited cancer risk are highly motivated to participate in clinical research—but most are never informed about studies by their healthcare team. ClinicalTrials.gov is not patient friendly, and hereditary cancer patients find the site difficult to use and understand. FORCE’s “Search and Enroll Tool” bridges this gap by offering accessible, accurate, and easy-to-understand listings of studies enrolling hereditary cancer patients. Results from our focus groups and survey demonstrate that the tool meets a critical need. Participants reported high user satisfaction, comprehension, and intention to utilize the tool to enroll in future studies. Citation Format: S. J. Friedman, D. B. Rose, J. D. Rogers, K. N. Owens, P. L. Welcsh, M. Dean, R. H. Pugh Yi. Using a plain language tool to overcome barriers to research participation by people with inherited cancer risk [abstract]. In: Proceedings of the San Antonio Breast Cancer Symposium 2025; 2025 Dec 9-12; San Antonio, TX. Philadelphia (PA): AACR; Clin Cancer Res 2026;32(4 Suppl):Abstract nr PS3-02-26.