Cancer disparities research network: The development of a culturally appropriate communication tool

The Cancer Disparities Research Network (CDRN) is an NCI-funded regional partnership spanning the Northeastern portion of the U.S. from the Dakotas to the eastern seaboard with a southern border of Iowa, Illinois, Indiana, eastward to New Jersey. CDRN, utilizing a community-engaged research approach seeks to improve participation of underrepresented populations in biospecimen research. We detail development of a tool to facilitate dialogue and enhance the consent process between trial recruiters and research participants. We conducted a series of meetings across our region with biospecimen/biobanking experts, community engaged researchers, community partners, and cancer center administrators regarding barriers to improving clinical trial and biospecimen research. The informed consent process was identified as a major factor in limiting participation of underrepresented populations in research. The communication tool was developed after an extensive literature review of existing tools and collection of region-wide pilot data from community focus group reflections on a biospecimen research education module. CDRN members participated in 7 iterations of this tool prior to cognitive testing with participants and recruiters. The communication tool consists of a deck of cards that seeks to optimize the conversation around research participation. Cards are organized into three sections: Part 1: basic research information; Part 2: trial-specific details; Part 3: research participants' rights. We will present data on the tool's development and cognitive testing amongst African American, Latino, and White participants. This tool has the potential to improve communication at the point of trial recruitment.