Engaging Patient Advocates to Reduce Breast Cancer Disparities: Opportunities to Advance Breast Cancer Research and Engagement.

Abstract

Inclusion of patient advocates in breast cancer (BC) research as experts, co-creators, and decision-makers has the potential to reduce breast cancer health disparities and enhance the implementation of clinical research. However, patient-advocates are often not included throughout the cancer care continuum. In this study, we examine the strategies of our patient advocacy training model to increase biomedical knowledge, address patient health literacy, empower patients, and lower access barriers, to facilitate participation in genomic research among Black women in five regions in the USA with the highest breast cancer disparities for Black women. This is a secondary analysis of patient advocates who were recruited to complete a breast cancer advocacy training program. Advocates were surveyed on the following topics: breast health knowledge, breast cancer screening, and diagnostic knowledge self-efficacy to advocate in medical settings. In this cross-sectional study design, we conducted a bivariate analysis using chi-square test to compare and describe participants' pre- and post-survey responses after completion of the advocacy training. With frequencies and means, we summarized participants' demographic factors, perceptions, and healthcare access barriers, such as participation in genetic counseling and testing. A total of 107 (86%) participants were Black women, with a mean age of 43 (8.5 sd). Breast cancer knowledge was 25% higher after completing the advocacy training compared to pre-training assessments (p < .001). Breast cancer screening diagnostic knowledge was 20% higher after completing the advocacy training compared to pre- training assessments (p < .001). Similarly, we saw a 24% increase in participants self-efficacy in medical settings (p < .001). This article provides an overview of training strategies involving patient-advocates' role as needed experts within cancer disparities and cancer research. The advocacy training materials increased breast cancer screening knowledge and willingness to engage in community outreach activities to address breast cancer disparities. Findings from this work highlight the impact of educational training strategies to optimize patient-advocate participation and self-empowerment in cancer control and prevention with a focus on breast cancer related knowledge, mammography screening, and advocacy during medical encounters.