Knowledge is power: Designing an educational program to support black breast cancer patients

ABSTRACT

Background. Black women diagnosed with breast cancer are 40 percent more likely to die than their Caucasian peers. They are often diagnosed with higher staged cancers, when treatments are more toxic and costly (Centers for Disease Control, 2018). In addition, Black women have worse stage-specific survival than white women (American Cancer Society, Cancer Facts and Figures for African Americans 2019-2021). Lack of medical knowledge and social isolation are contributing factors to health care disparities. To address these factors, in fall 2019 a member of the board of directors of Living Beyond Breast Cancer approached LBBC to design an educational program for Black patients newly diagnosed with early-stage and metastatic breast cancer. The overarching program goal was to address health care disparities for Black people. The program aimed to increase knowledge about breast cancer and about the implicit and explicit bias Black patients encounter in health care settings, and to provide tools to address it. The program also prepared patients to be informed partners in their health care and connected them to existing resources and to other Black patients for peer support. Methods. LBBC convened an advisory board of ten Black community leaders with expertise in oncology, health care disparities, social and practical support, and advocacy. Most had a personal history of breast cancer. A consultant with expertise in program development and health disparities was hired to oversee the project. The advisory board met monthly to develop content, format, outreach, and speaker recommendations. Initial plans were to deliver the program as a one-day symposium attached to LBBC's fall conference. Because of the COVID-19 pandemic, the advisory board decided to offer the program virtually using a combination of live sessions supplemented with video content. Learnings were intended to prepare participants to more effectively communicate with health care professionals and empower them with practical steps to access appropriate care. An evaluation was designed, and participants received an emailprompting them to offer feedback after each session. Results. The program was delivered from September through October 2020. Speakers were Black oncologists, social workers, researchers, and advocates. The first session was an on-demand video offering guidance to recently diagnosed Black breast cancer patients. Three live sessions were delivered weekly on the topics of identifying barriers to accessing care, early-stage breast cancer treatment, and metastatic breast cancer treatment. The last two sessions focused on self-care and advocacy, with the final session delivered at LBBC's virtual fall conference. LBBC registered 436 people from 36 states and Washington, DC, Canada, and the United Kingdom. Participants ranged from age 27 to 83 and lived in urban, suburban, and rural areas. In all, 307 registrants identified as Black, and 40 reported a breast cancer diagnosis in the last six months. Of participants who completed program evaluations, 75 percent reported an increase in knowledge of breast cancer, 77 percent reported increased understanding of treatment, 82 percent reported increased confidence to have conversations with loved ones or health care providers, and 85 percent said they learned strategies to address implicit and explicit bias. An informal assessment of open-field responses demonstrated that attendees valued the programmatic focus on their unique needs as Black breast cancer patients. Conclusions. An educational program led and designed by Black health care professionals and patients can be successfully delivered in a combination live and virtual content format to improve knowledge, communication skills, and feelings of self-efficacy for Black people with breast cancer.