The lithium in ALS patients study publised by Wicks, Vaughan, Massagli and Heywood released online in nature biotechnology on April 24, sparked a Wall Street Article Health Industry article entitled “ALS Study Shows Social Media’s Value as Research Tool” as well as a WSJ health Blog article “The Future of Social Network-Based Trials.”
This study and it’s results have fueled an interesting debate on the relevance and future role of leveraging social networks such as PatientsLikeMe.com for clinical research. The authors summarize nicely several advantages and limitations in such approaches to research, and are quick to point out that if lithium had shown promising effect, a full scale controlled clinical trial would still be needed. Those of us in the clinical research field must wrestle with such research as it seems that social networks and their application for research are here to stay. It does challenge our traditional notions of controlling for selection bias, the use of a placebo control group, how to properly consent such patients in the cyber network world, and flips around around the notion of a PI. In fact, these patients had to go out and ask their doctors to prescribe lithium to be in the study, and there were anecdotal reports of visits to multiple doctors to obtain that Rx! Who is the investigator here? This is sure to be the first of many such studies that we will follow with interest.