A Novel Personal Health Network for Patient-Centered Chemotherapy Care Coordination

Cancer is the second leading cause of death in the United States. Cancer care is a complex and complicated process involving diverse practitioners, multiple specialists, and a range of inpatient, outpatient, and home care services with numerous transitions for the patients. Cancer patients undergoing chemotherapy are at risk of unplanned emergency visits and hospitalizations and can benefit from care coordination. There are few examples of systems that fully engage patients, family and caregivers along with clinicians and other care resources to collaboratively coordinate chemotherapy. This paper reports on the development of a prototype "personal health network" (PHN) using social networking technology to support patient-centered chemotherapy care coordination in a comprehensive cancer center. Requirements for the prototype were generated by analyzing two frameworks, the cancer continuum framework and the framework for information technology in care coordination, and reviewing the literature on self-management and care coordination. The resulting requirements were implemented and reviewed with a trans-disciplinary team of clinicians and researchers. The PHN was found to fulfill the key requirements identified through the analysis of frameworks. A prototype was built rapidly and reviewed by an internal trans-disciplinary team. The refined prototype will be field tested with patients and nurse care coordinators to assess usefulness and usability in preparation for a larger scale clinical trial.