Journal articles provide reliable and current information about cancer research.• This can offer hope to people with cancer and help them make decisions about their care.• Here, the authors suggest ways in which different groups may help people with cancer to find, view, and understand articles.• For example, journals should make articles free to view if they describe research that could change patient care.• Also, clear titles and easy-to-follow summaries or videos may help people to find relevant articles and understand the main findings.• It is important to explore ways to best share research with all those whose lives it may affect.

Breast cancer incidence rates for Black women are lower than that of their white counterparts, yet the mortality of Black women is 40 percent higher. Among women under 50, the mortality disparity is even greater: double that of white women. The gap between breast cancer incidence and mortality among Black women is complex and multifactorial. Social, economic, behavioral factors may partially account for the disparity, along with historical and systemic racism causing trauma and mistrust within this community. Black women are also more likely than white women to have inadequate health insurance or access to health care facilities, which may affect access to screening, follow-up care, and completion of treatment. This study measures social, economic and behavioral factors that affect access to adequate healthcare through listening sessions entitled 'Pull Up A Seat: Shining a Light on the Experiences of Black Women with Breast Cancer’. 'Pull Ups' are events in partnership with The Tigerlily Foundation and GRASP, bringing together health equity experts, healthcare providers, scientists, researchers, clinicians and Black women with a history of breast cancer. Each meeting consists of a lecture on broad topics such as racism in medical research, clinical trial exclusion/inclusion criteria and history of mistrust from Black community. After the lecture, breakout rooms led by Black patient advocates are held for healthcare providers with the concept that patients are experts in living with the disease and have much to share – and teach – healthcare providers and researchers. Our methodology will be based on surveys post-event to attendants and an impact report with metrics and teachings to health providers and researchers to determine learning and changes to be made in practices. We believe this program created for and by black patients affected by breast cancer from across diverse and underserved populations will help increase the participation of black women with breast cancer in clinical trials through patient empowerment and health provider awareness of unconscious biases. In addition, we believe this program will result in co-creating solutions to limit barriers for Black women. Citation Format: Julia Maues, Maimah Karmo, Shanda Cooper, Sheila McGlown, Jamil Rivers, Chawnte Randall, Tania Koulakian, Christine Hodgdon, Isaac Chan. 'Pull Up A Seat': A program shining a light on the experiences of Black women with breast cancer for healthcare providers and the scientific community [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr PO-033.

TPS1129 Background: Women of color (WOC) with breast cancer miss and fail key points in care due to racial disparities in cancer services. Conscious and unconscious bias means that these women are not treated in a timely way or as rigorously. They are offered fewer options, and the patient navigation and education needed for them to self-advocate is ignored. Black women in particular have the highest breast cancer death rates. Care delivery differs even independent of such variables as literacy, income, and education. Separately and incrementally, findings to date have shown the potential oof patient navigation, equity assessment, and mobile support to reverse these disparities. In pilot investigations –– partnering with academic cancer centers –– The Chrysalis Initiative (a nonprofit patient advocacy and research organization) has validated the potential of combining these approaches in a three-part intervention. Based on preliminary work, it is hypothesized patients will: experience significantly greater adherence to the recommended continuum of care, without disruption or barriers; more often seek second opinions and additional supportive resources, and engage in clinical trials; demonstrate less co-morbidities, through more preventive measures and healthful lifestyle; suffer fewer interactions perceived to be influenced by racism; undergo less financial distress, with guidance on managing and planning costs; feel more confident and more optimistic in their outlook; and achieve better clinical results and lower costs. Methods: To determine and document the full impact, both quantitatively and qualitatively, of the experimental three-part intervention, the trial is: delivering navigation/coaching services to the study population, using counselors who are predominantly WOC who have experienced the challenges of breast cancer care. Surveys and interviews pre- and post-intervention will add to impact measures; providing the experimental group with the BC Navi App on both iOS and Android devices . Developed in partnership with InTouch, the app supports engagement and tracking. It provides a dashboard for care evaluation to supplement EMR data; conducting an equity assessment of breast cancer services of partnering clinical programs through use of focus groups with staff, patients, and community; procedural checks; and data collection from center EHR systems. The review audits 40 domains of care based on NCCI, NCI, ASCO, ACR, and other standards. The assessment team works closely and collaboratively with each cancer center’s clinical and administrative staff to reveal disparities and find consensus on ways to close gaps. This trial in progress is randomizing 200 subjects to the coaching/mobile app intervention arm and 100 to benefits of the equity assessment only, with comparison to nonWOC with breast cancer. The trial aims to disseminate the three-part intervention in easily reproducible form.

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 email prompting 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. Citation Format: Jamil Rivers, Tiah Tomlin, Arin Ahlum Hanson, Catherine Ormerod, Janine E Guglielmino. Knowledge is power: Designing an educational program to support black breast cancer patients [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P3-17-02.