Facebook-Like Portal Helps Teens with Crohn's Collaborate on Medical Research

A team of pediatricians and computer scientists is developing a social network that turns doctors and patients into research collaborators

Illustrations by Thomas Fuchs

Despite medical advances, the treatment of many chronic diseases remains haphazard and inconsistent. Teenagers with Crohn’s disease, a painful digestive disorder often diagnosed in adolescence, for example, sometimes get conflicting information regarding medications, diet modifications and alternative therapies. To help improve the care these patients receive, a team of pediatricians and computer scientists is developing a new type of social network that turns doctors and patients into research collaborators.

Here is how it works: With each therapy or treatment modification, doctor and patient participate in a mini clinical trial. The patient records symptoms through daily reports, filed via text message or the Internet. The doctor uses that information to make immediate decisions. Should the dosage of medication be changed? Is the new diet helping to alleviate symptoms? And the data from those individual experiments are then deposited in a Web bank, where they can be aggregated with other patient data, from similar experiments, to further the understanding of the condition in question. In early tests of this process, doctors were able to increase the rate of remission from 55 to 78 percent without adding any new medications to their arsenal. “The idea is to make care continuous and to collect real-time data that will change our understanding and treatment of [Crohn’s],” says Peter Margolis of Cincinnati Children’s Hospital Medical Center, a co-founder of the new portal, the Collaborative Chronic Care Network.

The network, known as C3N, launched earlier this year at some 30 institutions around the country. For now it focuses on pediatric Crohn’s, but it could grow to include other conditions, such as diabetes, heart disease, psoriasis and some cancers. The site’s founders believe C3N will also provide a new platform for clinical research, one that is significantly less profit-driven. “Because large-scale clinical trials are so expensive, we only ever really test the treatments that promise a big payoff,” says Ian Eslick, a Ph.D. candidate at the M.I.T. Media Lab and C3N’s chief Web architect. “With C3N, we can scientifically test all the other things—probiotics, gluten-free diets, changes in iron intake—that people are already trying at home and that seem promising, even if they aren’t profitable.”

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