Online Program

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

Tuesday, November 5, 2013

Erika de la Riva, MA, Department of Obstetrics and Gynecology, Northwestern University's Feinberg School of Medicine, Chicago, IL
Samantha Torres, BS, Department of Obstetrics and Gynecology, Northwestern University's Feinberg School of Medicine, Chicago, IL
Chirisse Taylor, MD, MPH, Department of Obstetrics and Gynecology, Northwestern University, Feinberg School of Medicine
Linda Fleisher, PhD, MPH, Office of Health Communications and Health Disparities, Fox Chase Cancer Center, Cheltenham, PA
Marla L. Clayman, PhD, MPH, Robert H. Lurie Comprehensive Cancer Center of Northwestern University &, Division of General Internal Medicine, Northwestern University, Chicago, IL
Melissa Simon, MD, MPH, Departments of Obstetrics and Gynecology, Preventive Medicine and Medical Social Sciences, Northwestern University, Feinberg School of Medicine, Chicago, IL
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.

Learning Areas:

Advocacy for health and health education
Implementation of health education strategies, interventions and programs
Public health or related research

Learning Objectives:
List the biobanking research components that are essential for valid informed consent among minority and underrepresented populations. Discuss how this bilingual communication tool can supplement the informed consent process and be utilized across a variety of research studies.

Keyword(s): Clinical Trials, Minority Research

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am Principal Investigator of this administrative supplement which seeks to improve participation of underrepresented populations in biospecimen research. My research integrates social epidemiology principles with health services and health behavior intervention studies to reduce health disparities through community-based participatory research approaches in culturally and linguistically isolated communities. I am Associate Professor at Northwestern University and have faculty appointment as the Vice Chair of Clinical and Policy Research in the Department of Obstetrics and Gynecology.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.