Patients often reveal more details about their medical conditions in discussions on social networks, blogs, and other online forums than they share with their doctors. They talk about their experience with illness and the medications they're taking in more detail. They bring up issues they don't realize are relevant to their treatment or that they're too embarrassed to share face to face.
And now companies are starting to mine online chatter for valuable information that can identify trends in patient symptoms and outcomes, track the effectiveness of treatments, spot complications with drugs and drug interactions, identify patients for clinical trials, and identify market opportunities.
One of the early market leaders is PatientsLikeMe, which offers an online data-sharing platform for patients with "life-changing" illnesses. About 80,000 people participate in 11 disease communities, including ALS, chronic fatigue syndrome, depression and other mood disorders, epilepsy, fibromyalgia, HIV/AIDS, multiple sclerosis, organ transplants, and Parkinson's.
PatientsLikeMe works with pharmaceutical makers UCB and Novartis; various research centers, including Johns Hopkins, University of Wisconsin, Penn State, and the Milton S. Hershey Medical Center; and several non-profit organizations. It provides them with aggregated and anonymized data from its patient profiles and discussion forums that they can analyze themselves. PatientsLikeMe also offers its own analytics services.
Novartis has used information gathered from PatientsLikeMe discussion forums and patient profiles to determine that multiple sclerosis patients have difficulty managing the injectable drugs that are a standard part of their treatment. It has also used PatientsLikeMe services to recruit patients for clinical trials of a pill alternative, called Gilenya. Novartis has since gotten Food and Drug Administration approval for Gilenya.
PatientsLikeMe is among a small number of companies starting to track and analyze patient-generated online data. Another is NielsenHealth, which provides BuzzMetrics services that include data collection and analysis, focusing on what people are saying about healthcare and pharmaceutical companies' products. Some pharmaceutical companies are doing this sort of research and analysis on their own, as well.