ACORI Call to Action Summit Activating Equity in Community Oncology Research-Day One: Centering the Patient Perspective in Community Cancer Research

Video Transcription

Video Summary

The panel discussion focused on centering the patient perspective in community cancer research, emphasizing that meaningful clinical trials must be built with communities, not just delivered to them. Moderator Jeanne Ragnante introduced expert panelists Shanta Chambers, Venus Ginez, and Rodney Herring, who each described how patient and community engagement differ across Black, Latino, and Indigenous communities.<br /><br />A major theme was that clinical trial design should be informed by patients and communities from the very start, including study questions, communication materials, recruitment, consent, logistics, and dissemination. Speakers stressed that trust, cultural relevance, language access, and compensation for community partners are essential. They also highlighted barriers such as poor health literacy, mistranslated materials, historical mistrust, transportation, childcare, parking costs, and financial burden.<br /><br />The panel called for dismantling power dynamics in research and building true partnerships with trusted community organizations, promotores, and tribal leaders. Rodney explained that Indigenous research requires understanding tribal governance, sovereignty, and long-term community benefit. Venus emphasized culturally and linguistically appropriate outreach and the importance of community advocates. Shanta stressed that research must account for social determinants of health and community context.<br /><br />The discussion closed with the core message: “Nothing with the community without the community.”

Keywords

patient perspective

community cancer research

clinical trials

community engagement

cultural relevance

language access

health literacy

tribal sovereignty

research partnerships