The digital phenotype.

Patients with serious diseases may experiment with drugs that have not received regulatory approval. Online patient communities structured around quantitative outcome data have the potential to provide an observational environment to monitor such drug usage and its consequences. Here we describe an analysis of data reported on the website PatientsLikeMe by patients with amyotrophic lateral sclerosis (ALS) who experimented with lithium carbonate treatment. To reduce potential bias owing to lack of randomization, we developed an algorithm to match 149 treated patients to multiple controls (447 total) based on the progression of their disease course. At 12 months after treatment, we found no effect of lithium on disease progression. Although observational studies using unblinded data are not a substitute for double-blind randomized control trials, this study reached the same conclusion as subsequent randomized trials, suggesting that data reported by patients over the internet may be useful for accelerating clinical discovery and evaluating the effectiveness of drugs already in use.

Recent research in Japan and Taiwan has found that the volume of Internet searches each month on Google for suicide-related terms is sometimes associated with the monthly suicide rate. The present study sought to examine whether this association between suicide rates and Google searches for suicide are found over regions. Suicide rates in the state of America in 2009 were examined for their association with search volume on Google for "commit suicide," "how to suicide" and "suicide prevention." Suicide rates for the 50 American states were positively associated with the search volume for all three terms. Internet searches for suicide may provide a faster way of monitoring possible trends in suicide than waiting for central governments to compile suicide statistics. Copyright © 2012 Elsevier B.V. All rights reserved.