Abstract
The Health Research Engagement Intervention (HREI) aims to reduce information and access disparities for breast cancer research opportunities among low-socioeconomic status (SES) and limited English proficient (LEP) breast cancer survivors by providing neutral, non-trial-specific information about health research via a trusted patient navigator. Qualitative methods in the context of a community-based participatory research design were used to iteratively design the HREI in collaboration with community-based care navigators from a trusted community organization, Shanti Project, and to locate appropriate research studies in collaboration with a web-based trial-matching service, BreastCancerTrials.org (BCT). Navigators were first trained in clinical trials and health research and then to deliver the HREI, providing feedback that was incorporated into both the HREI design and BCT’s interface. Our intervention pilot with low SES and LEP survivors (n = 12) demonstrated interest in learning about “health research.” All 12 participants opted to obtain more information when offered the opportunity. Post-intervention questionnaires showed that three of 11 (27 %) participants independently pursued additional information about research opportunities either online or by phone in the week following the intervention. Post-intervention navigator questionnaires indicated that navigators could confidently and efficiently deliver the intervention. LEP patients who pursued information independently faced language barriers. The HREI is a promising and potentially scalable intervention to increase access to neutral information about breast cancer research opportunities for low-SES and LEP individuals. However, in order for it to be effective, systems barriers to participation such as language accessibility at sources of health research information must be addressed.
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Acknowledgments
This research was supported by a grant from the California Breast Cancer Research Program (17AB-1500).
We gratefully acknowledge the support of the California Breast Cancer Research Program for funding this research. This research could not have been successfully carried out without the collaboration of the Shanti Care Navigators and Shanti clients. We greatly appreciate their participation. Susan Colen was instrumental in implementing the changes at BreastCancerTrials.org. We thank Matthew Simmons for his wonderful work on the intervention materials and figures presented here. BreastCancerTrials.org thanks the California Endowment for its support of the development of the Navigator Portal.
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Nickell, A., Burke, N.J., Cohen, E. et al. Educating Low-SES and LEP Survivors About Breast Cancer Research: Pilot Test of the Health Research Engagement Intervention. J Canc Educ 29, 746–752 (2014). https://doi.org/10.1007/s13187-014-0650-x
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DOI: https://doi.org/10.1007/s13187-014-0650-x