The patient-caregiver integrated network

Abstract

Dealing with a cancer diagnosis and cancer treatment involves communication among clinicians, patients, families, friends and others affected by the illness. The hypothesis for this research is that an informatics system can effectively support the communication needs of cancer patients and their formal and informal caregivers. How can an online communication system be made accessible and desirable for all of the different players involved in the patient’s care and support? The initial design of a novel informatics-based system for cancer communication was conducted in three phases (The Discovering Phase, The Developing Phase and The Testing Phase). Five types of clinical and supportive relationships were identified and supported by in-depth interviews with cancer patients and their informal caregivers. A prototype web-based communication system was created with an emphasis on the interpersonal relationships between patients, families, and clinicians. The system was used over the course of two months by a group of clinicians and head and neck cancer patients in the Vanderbilt Ingram Cancer Center. A case study is presented of one patient’s detailed feedback and use of the system with the clinicians and with family and friends. A larger study of the system’s effect on the clinical and social outcomes will be conducted during the PhD phase of this research. The current phase of this research concludes with the initial user feedback and iterative design of the system prototype.