The web is buzzing with discussion of the case of Deborah Copaken Kogan, a writer and Financial Times columnist who discovered—via Facebook—that her child had a rare and dangerous disease. Kogan’s story began when her four-year-old son developed a stubborn rash, followed by a fever and intense swelling. After Kogan began to post photos of her sick child on Facebook, she received a panicked phone call from a former neighbor who had seen the photos. “You have to get to the hospital,” the neighbor warned. “Now.” The neighbor had accurately guessed that Kogan’s son was suffering from Kawasaki disease, a potentially fatal disorder that causes inflammation in the walls of the arteries, including those around the heart. Kogan credits Facebook with saving her son’s life. Can online social networks really be used as diagnostic tools, or is this just hype?
In recent years, the medical community has become increasingly interested in the possible uses of social networking. In 2008, an editorial in Nature Biotechnology offered a largely positive assessment of PatientsLikeMe—a site where patients discuss their medical conditions and share health data. After the editorial was published, company officials, along with a pediatrics professor at Harvard Medical School, outlined some of the research benefits of their approach in a letter to the journal. The authors note that the site allows rapid, “real-time” experiments to take place, as patients undergoing new treatments document the effects on the site. (Data is entered into standardized forms, which means it can be graphed and tracked.) The company officials caution that patients’ self-reported information is no substitute for a clinical trial. Still, they note, it is useful for tracking the early results of experimental treatments, such as the use of lithium for ALS (Lou Gehrig’s disease): “The tool has offered preliminary assessment on how the drug performed in the ‘real world’; in fact, the system worked so well, data were available for hundreds of ALS patients before researchers were able to begin enrolling for a follow-up study.” While they note that the site’s approach carries some risk, including “reporting bias” and “misinformation,” the authors predict their tool will ultimately change “the pace and quality of evidence-based medicine.”