The Athena Breast Health Network: developing a rapid learning system in breast cancer prevention, screening, treatment, and care.

The term breast cancer covers many different conditions, whose clinical course ranges from indolent to aggressive. However, current practice in breast cancer prevention and care, and in breast cancer epidemiology, does not take into account the heterogeneity of the disease. A comprehensive understanding of the etiology and progression of different breast cancer subtypes would enable a more patient-centered approach to breast health care: assessing an individual's risk of getting specific subtypes of the disease, providing risk-based screening and prevention recommendations, and, for those diagnosed with the disease, tailored treatment options based on risk and timing of progression and mortality. The Athena Breast Health Network is an initiative of the five University of California medical and cancer centers to prototype this approach and to enable the development of a rapid learning system-connecting risk and outcome information from a heterogeneous patient population in real time and using new knowledge from research to continuously improve the quality of care. The Network is based on integrating clinical and research processes to create a comprehensive approach to accelerating patient-centered breast health care. Since its inception in 2009, the Network has developed a multi-site, transdisciplinary collaboration that enables the learning system. The five-campus collaboration has implemented a shared informatics platform, standardized electronic patient intake questionnaires, and common biospecimen protocols, as well as new clinical programs and multi-center research projects. The Athena Breast Health Network can serve as a model of a rapid learning system that integrates epidemiologic, behavioral, and clinical research with clinical care improvements.

The Communication and Care Plan: a novel approach to patient-centered clinical information systems.

The US health care system and its information access models are organized around institutions and providers. Patient-centered functionality is rarely present in prevailing information systems and, if present, it typically does not ideally support shared decision making about important treatment events. We sought to better understand the functional needs of providers and patients around the process of care plan decision making, and used this information to develop a prototype decision support tool, using women with newly diagnosed breast cancer as our clinical scenario. This paper describes the user-centered design process we undertook and the resulting prototype system, the Communication and Care Plan (CCP).