A structured patient advocacy–led communication model to improve awareness, trust, and access to oncology clinical trials in Brazil.

e13505 Background: In low- and middle-income countries (LMICs) like Brazil, participation in oncology clinical trials is hindered by limited Portuguese-language information, low health literacy, and historical mistrust. Patient advocacy organizations are vital bridges between patients, investigators, and sponsors. This work evaluates a national advocacy-led program designed to improve awareness and informed access to research through patient-centered communication. Methods: "Walking with Confidence" ( Caminhando com Confiança ) is a nationwide program by Instituto Projeto CURA, grounded in Good Clinical Practice and Brazilian regulations. The multi-channel initiative includes: Educational Materials: Paper brochures and curated digital content reviewed by CURA’s Scientific and Patient Committees for lay audiences. CURA Talks: Thematic educational events held alongside oncology congresses. Health Literacy Initiatives: Digital content and forums to clarify scientific concepts. CURA Meetings: Multi-stakeholder forums involving investigators, research centers, and health system leaders. Performance was prospectively monitored throughout 2025 using digital engagement and event-based metrics. Results: In 2025, the program achieved the following milestones: Digital Outreach: Published > 250 posts/stories and > 30 in-depth scientific reviews. The program reached 365,000+ individuals on Instagram (12,000+ interactions) and generated 535,000+ LinkedIn impressions. Direct Engagement: Conducted 4 CURA Talks and 1 CURA Meeting, averaging 100 participants per event (patients, caregivers, and professionals). Web & Email: The institutional website saw ~7,100 visits. Newsletters reached 2,961 subscribers, resulting in 8,647 opens and 7,287 clicks Compliance: All activities were non-promotional and maintained full ethical and regulatory compliance. Conclusions: The "Walking with Confidence" program offers a scalable, ethical model for enhancing the clinical research ecosystem in Brazil. By fostering patient autonomy and professional literacy, the program promotes inclusive trial participation and accelerates the local development of oncology innovations.

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Publication Details

Journal
Journal of Clinical Oncology
Published
2026-05-28
DOI
https://doi.org/10.1200/jco.2026.44.16_suppl.e13505
Primary Topic
Mental Health and Patient Involvement
Type
article
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article

A structured patient advocacy–led communication model to improve awareness, trust, and access to oncology clinical trials in Brazil.

Luciana Papaléo Pereira, Roberto Jun Arai, Fernanda Schwyter, Heloisa Resende et al.
Journal of Clinical Oncology
Mental Health and Patient Involvement
article

A structured patient advocacy–led communication model to improve awareness, trust, and access to oncology clinical trials in Brazil.

Luciana Papaléo Pereira, Roberto Jun Arai, Fernanda Schwyter, Heloisa Resende, Camila Francescato
article en

Abstract

e13505 Background: In low- and middle-income countries (LMICs) like Brazil, participation in oncology clinical trials is hindered by limited Portuguese-language information, low health literacy, and historical mistrust. Patient advocacy organizations are vital bridges between patients, investigators, and sponsors. This work evaluates a national advocacy-led program designed to improve awareness and informed access to research through patient-centered communication. Methods: "Walking with Confidence" ( Caminhando com Confiança ) is a nationwide program by Instituto Projeto CURA, grounded in Good Clinical Practice and Brazilian regulations. The multi-channel initiative includes: Educational Materials: Paper brochures and curated digital content reviewed by CURA’s Scientific and Patient Committees for lay audiences. CURA Talks: Thematic educational events held alongside oncology congresses. Health Literacy Initiatives: Digital content and forums to clarify scientific concepts. CURA Meetings: Multi-stakeholder forums involving investigators, research centers, and health system leaders. Performance was prospectively monitored throughout 2025 using digital engagement and event-based metrics. Results: In 2025, the program achieved the following milestones: Digital Outreach: Published > 250 posts/stories and > 30 in-depth scientific reviews. The program reached 365,000+ individuals on Instagram (12,000+ interactions) and generated 535,000+ LinkedIn impressions. Direct Engagement: Conducted 4 CURA Talks and 1 CURA Meeting, averaging 100 participants per event (patients, caregivers, and professionals). Web & Email: The institutional website saw ~7,100 visits. Newsletters reached 2,961 subscribers, resulting in 8,647 opens and 7,287 clicks Compliance: All activities were non-promotional and maintained full ethical and regulatory compliance. Conclusions: The "Walking with Confidence" program offers a scalable, ethical model for enhancing the clinical research ecosystem in Brazil. By fostering patient autonomy and professional literacy, the program promotes inclusive trial participation and accelerates the local development of oncology innovations.

Journal of Clinical OncologyVol. 44(16_suppl)
Centro Universitário de Volta Redonda (BR)
Quality Education
Openalex Percentile: Top 4%
Mental Health and Patient Involvement
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