The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) of the Centers for Disease Control and Prevention (CDC) is implemented through cooperative agreements with state health departments, US territories, and tribal health organizations (grantees). Grantees typically contract with clinicians and other providers to deliver breast and cervical cancer screening and diagnostic services. As required by the CDC, grantees report biannually a subset of patient and clinical level program data known as the Minimum Data Elements. Rigorous processes are in place to ensure the completeness and quality of program data collection. In this article, the authors describe the NBCCEDP data-collection processes and data management system and discusses how data are used for 1) program monitoring and improvement, 2) evaluation and research, and 3) policy development and analysis. They also provide 2 examples of how grantees use data to improve their performance.

Introduction/Objectives: Research demonstrates that after a breast cancer diagnosis, young women, especially those of racial and ethnic groups, may experience a more negative impact on their quality of life, emotional functioning, and reproductive health than older women. For women under the age of 45, African American women have the highest breast cancer incidence of any racial/ethnic group, and there is an increased risk of hereditary breast cancer among Jews who carry BRCA mutations. In conjunction with Sisters Network Inc. and Sharsheret, The Centers for Disease Control and Prevention launched a formative evaluation to understand African American and Jewish young breast cancer survivors' (YBCS) psychosocial and reproductive health needs and preferred communication channels to obtain needed health information. Methods: Sisters Network Inc. conducted four focus groups with African American YBCS. Sharsheret conducted four groups with Jewish YBCS. Thematic analysis identified major themes/patterns within and across the focus groups. Results: Fertility and sexual health were major YBCS concerns. Participants reported barriers to obtaining psychosocial and reproductive health information, including sexual taboos and lack of provider sensitivity to address these needs. Participants said that breast cancer resources are not tailored to YBCS. Participants preferred to receive breast cancer information via multiple channels, including written materials, the Internet, telephone and smartphone applications. Discussion/Implications: African American and Jewish women encounter similar barriers to obtaining psychosocial and reproductive health information. Both groups report difficulty in obtaining relevant health information and advice from their medical providers. Study findings may be used for developing of culturally-appropriate communication and interventions for YBCS that would help eliminate breast cancer health disparities in YBCS. Citation Format: Temeika L. Fairley, Natasha Buchanan, Ashani Johnson-Turbes, Leslie R. Schover, Angela R. Moore, Brandie Yancy, Dara Schleuter, Mary-Ann K. Hall, Kelly P. Hodges, Rochelle Shoretz. Developing culturally appropriate interventions providing psychosocial and reproductive health support to young breast cancer survivors: Evaluation findings. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr C32. doi:10.1158/1538-7755.DISP13-C32