Cancer patient blogs: How patients, clinicians, and researchers learn from rich narratives of illness

摘要

Blogs written by cancer patients can offer deep insights to other patients about what to expect in the course of illness and treatment, can provide information to oncologists and other clinicians about patient experiences outside of appointments, and can increase researcher awareness of treatment effects and alternatives. While many forms of social media and online communities are used by patients, blogs are unique in that they provide a narrative of many aspects of disease and treatment, offering a comprehensive view of the disease experience delivered in installments, often from diagnosis through life as a survivor. However, the impact of patient blogs has been modest thus far because patient blogs are spread across the internet and, with no central repository of patient blogs, opportunities for analysis are limited. Given the life-altering and potentially devastating impact of cancer on people's lives, we seek to develop a tool that will analyze tens of thousands of patient-authored blogs to improve cancer patient care.