Abstract A33: Engaging Linguistically and Ethnically Diverse Low Income Women in Health Research
Authors: Nickell Alyssa , Cohen Elly , Stewart Susan , Cheng Janice Ka Yan , Lawlor Katie , Colen Susan , Burke Nancy , Guerra Claudia , Joseph Galen 
Published: March 2017

Underserved breast cancer patients and survivors are typically offered fewer opportunities to participate in cancer research. To address this disparity, a community based navigator program, Shanti's Margot Murphy Breast Cancer Program (Shanti) initiated a collaboration with UCSF researchers and BreastCancerTrials.org (BCT), a nonprofit clinical trials matching service to explore the potential role of a trusted community-based organization as a source of culturally appropriate education and access to clinical trial information. The pilot study identified guiding principles for development of our Health Research Engagement Intervention (HREI): a) within the context of a trusted relationship, navigators provide education about health research and increase access to information about ongoing breast cancer studies, emphasizing the range of treatment and non-treatment quality-of-life and observational studies; b) provide education and information at a time when the patient is not in the initial crisis of diagnosis; and c) address systems barriers to health research information and participation.

This mixed method study includes: 1) capacity-building for the CBO partner (Shanti) and the health research access point (BCT) to reduce system barriers and to conduct evaluations of enhancements to both; 2) a prospective randomized controlled trial (RCT) of the HREI with pre and post surveys; and 3) qualitative evaluation of the trial implementation. The trial's primary outcome is health research information-seeking behavior. Secondary outcomes include health research knowledge, attitudes towards research participation, and health empowerment.

To enhance capacity and address system barriers, we added a multilingual (English, Cantonese, Spanish) voicemail system to BCT's helpline, trained staff to use professional healthcare interpreters and enhanced the design of the BCT website for easier navigation by lower health literacy patients. At Shanti, we trained care navigators on health research and the HREI and implemented a Client Tracking Calendar to improve identification of and projections for eligible clients. All Shanti clients who speak English, Cantonese or Spanish and have “low care navigation needs” are eligible (i.e. client may or may not still be undergoing treatment but is no longer in the crisis of initial diagnosis or burdened by treatment protocols). Eighty-six of 150 RCT participants have been enrolled to date and 74 have completed the trial. Interim analyses indicate that participants in the intervention group were more likely than those in the control group to seek health research information.

Through sustainable and synergistic capacity building enhancements to two breast cancer organizations, this study is working to increase equity in access to health research information and research participation opportunities for diverse underserved breast cancer patients and survivors. The HREI, if proven effective after completion of the trial, has the long-range potential to reduce disparities in access to health research information and participation opportunities, and thereby to impact progress of breast cancer research. Furthermore, the HREI is a dissemination-ready navigator protocol with the potential for replication in underserved communities nationally.

Note: This abstract was not presented at the conference.

Citation Format: Alyssa Nickell, Elly Cohen, Susan Stewart, Janice Ka Yan Cheng, Katie Lawlor, Susan Colen, Nancy Burke, Claudia Guerra, Galen Joseph. Engaging Linguistically and Ethnically Diverse Low Income Women in Health Research. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr A33.