When breast cancer is diagnosed, patients often find themselves overwhelmed and they need help with the challenge of balancing frequently complex treatment protocols with the demands of everyday life. Although there are many online tools to help patients choose among health care providers and lots of sites about breast cancer, few (if any) tools exist to assist patients in comparing and selecting treatment strategies, tracking their treatments across providers and institutions, and linking their treatment plan with the realities of their everyday lives.
To fill this void, a Project HealthDesign team led by the University of California, San Francisco (UCSF) is designing a personal health record (PHR) application to help breast cancer patients better understand and proactively coordinate their care. Using an open-source, free, Web-based PHR system, the team is developing a novel clinical information tool that is calendar-based, enabling patients to conveniently schedule and keep track of events important both to their lives and to the treatment of their illness. The tool will provide people who have breast cancer a voice and a window into the management of their own care.
Incorporating years of feedback and multiple patient and physician focus groups, the UCSF team has designed a prototype personal health record system for breast cancer patients and providers whose central feature enables the organization and display of information on a calendar to compare treatment options and show past and scheduled treatments. This application will collect critical data from patients and providers at the point of care. Using visualization tools, the PHR tool will facilitate the integration of treatment scheduling, care planning and reminders for visits, and make critical information such as prescriptions, next steps of care, and next visits easy to find. This tool supports collaborative decision making between the patient and provider and helps breast cancer patients gain better control over their treatment plan, giving them a clear sense of what has gone before and what is yet to come. Since fewer than 5 percent of all breast cancer patients receive the type of integrated care the plan could provide, this tool has the potential to revolutionize breast cancer care and the degree of control that patients have over their care. This tool is also designed to be a potential starting point for creating an anonymized patient-based registry open to patients, care providers and researchers. The UCSF team is planning a nationwide demonstration project to determine the viability of this patient-centered system as a transformative agent in breast cancer care.
Laura Esserman, M.D., M.B.A.
Director, Translational Informatics
University of California San Francisco
Carol Franc Buck Breast Care Center
1600 Divisadero Street
San Francicso, CA 94115