Engaging Underserved Women in Health Research

Investigator: Galen Joseph, PhD
Sponsor: California Breast Cancer Research Program

Location(s): United States


Underserved breast cancer patients and survivors are typically offered fewer opportunities to participate in cancer research than other women. As a result, critical life-saving treatments and quality of life services developed from the studies may not address their needs. This disparity exists despite a 1993 federal mandate to include minorities in clinical research, and significant efforts to address many documented patient, provider, and systems barriers to information about and participation in health research. Shanti Breast Cancer Program (Shanti) -- a trusted and long standing community-based organization providing critical health navigation services to ethnically diverse low-income breast cancer patients and survivors throughout the City and County of San Francisco -- initiated the collaboration that led to our recently completed CBCRP Pilot study (2011-2013). The purpose was to address the clinical trials information chasms experienced by Shanti clients. For this proposed Full study, as for our Pilot, Shanti is collaborating with UCSF faculty who have examined and documented disparities in clinical trials information and access for Bay Area breast cancer patients, and with BreastCancerTrials.org (BCT), a nonprofit resource dedicated to helping breast cancer patients and survivors find clinical trials and other health research opportunities personalized to their situation, and committed to making its services available to women regardless of language, education and computer access.

This study uses both qualitative and quantitative research methods including: (1) capacity building for the CBO partner (Shanti) and the health research access point (BCT); (2) a prospective randomized intervention trial with pre and post surveys; and (3) a process evaluation of the enhancements to Shanti and BCT and the trial intervention. Innovative elements: This is a highly synergistic partnership in that the union uses the strengths of each (Shanti and BCT) to directly address and compensate for the limitations of the other with regard to capacity to connect low-income diverse women with breast cancer research. Using these existing resources in this new and complementary way strengthens the overall care system for underserved breast cancer patients and survivors in the bay area, and is expected to efficiently and sustainably fill a persistent gap in access to health research information and participation opportunities.

Community involvement: Two related communities are involved throughout the development and implementation of this study: (1) multilingual Shanti Care Navigators who connect their clients with resources to help them keep up with their breast cancer treatments, such as money for rent, utilities and phone bills, access to free transportation and hot meals, translation services and emotional support; and who facilitate client participation in social and educational wellness activities to strengthen their engagement with the breast cancer community and their capacity to advocate for and manage their health. Navigators have participated in designing and will deliver the HREI protocol; and (2) post treatment survivors and metastatic patients with stable disease who are low-income, limited English speaking (LEP) Chinese and Latino, and ethnically diverse English speaking client population.

Future Plans: This study, which focuses on increasing access to health research information for post treatment breast cancer survivors and metastatic patients with stable disease, will lay the groundwork for adapting and testing our intervention with newly diagnosed breast cancer patients, and for use with other clinical trials access organizations. It will also prepare us to study the long-term effectiveness of our community education and systems interventions on research participation.