A Web-based network of patients with inflammatory bowel disease demonstrates how online patient communities can advance research and improve care, the Wall Street Journal reports.
Details of Online Network
The project -- called the Collaborative Chronic Care Network -- aims to improve inflammatory bowel disease remission rates. It involves 22 ongoing pilot programs at 33 research centers. About 6,800 patients currently are enrolled in the network, and researchers expect to have 10,000 patients enrolled by the end of the year.
Patients in the network can experiment with new treatments and monitor how different interventions affect them on a daily basis by sending data to their doctor. They also can use the network for social support by finding patients who share similar interests or live in close proximity.
One of the pilot programs sends four text messages daily to patients with ulcerative colitis, asking questions about their medications and sleep quality. The patients' answers are recorded in a graph, which the patients can analyze with their doctors.
According to a physician participating in the pilot program, the approach helped him detect patterns in symptoms that previously had gone unnoticed.
Advantages of Online Patient Communities
According to researchers, online patient communities are an effective platform for collecting data on inflammatory bowel disease, which affects too small of a population for most drug companies to be interested in conducting clinical trials.
Peter Margolis of Cincinnati Children's Hospital Medical Center, one of the developers of the network, said that some of the biggest centers studying the condition might treat only 500 patients, which is "not enough to tell whether any approach is making a difference" (Dockser Marcus, Wall Street Journal, 4/16).