Breast cancer patients' and providers' perspectives and attitudes toward personal health records

Patient use of online electronic personal health records (PHR) holds the potential to make important improvements in health outcomes. Breast cancer is second only to lung cancer in incidence in American women, affecting one in eight over the course of a lifetime. Longitudinal care for this population is complex including facilitation of ongoing shared decision making, management of treatment side effects and psychosocial distress as well as the need for o surveillance and healthy behavior promotion over time. As breast cancer care increasingly occurs in ambulatory settings, delivery of personal health information to breast cancer patients and families via PHR provides an opportunity to motivate and structure patients to proactively manage and improve their health, potentially increasing the utility and quality of care. The goal of this study is to examine breast cancer patients' perspectives on PHR and to compare patient attitudes with those of a breast cancer provider team. Thirty-two newly-diagnosed breast cancer patients and 20 providers were interviewed. The majority of both patients and providers expressed a need to share patient information, acknowledging concerns about sharing, including data security and confidentially issues, the possibility of unnecessarily increasing patient's anxiety and providers' burden, as well as patient health literacy issues to understand PHR. Despite patients' general enthusiasm for online health information and care management tools, providers voiced frustration with an increase in patient use of the internet for cancer information due to reliance on untrustworthy sources. Both patients and providers agreed that reliable information and understandable PHR would benefit patients throughout their treatment and survivorship. The benefits and challenges to developing a patient-centered PHR system will be discussed in terms of the implications for improving breast cancer patient care management and doctor-patient communication.