When they coined the term “peer review”, they probably weren’t thinking of social media, but that might be about to change. A new clinical trial studying Lou Gehrig’s disease used social media to help conduct the study.
The study was published in the journal Nature Biotechnology, and it looked at the effect of lithium on the progression of Lou Gehrig’s disease. The study, which based its data on the contributions of 596 patients, found that lithium does not have any impact on the progression of the disease. This contradicts a previous study. However, perhaps the most exciting part about this particular study was its use of social media.
The study used the social network PatientsLikeMe. The site lets users share treatment and symptom information, track real world outcomes, and talk to other people who empathize. Not only is it a “Facebook for those with life changing diseases”, it is also a data sharing community where people can go look at how other patients are handling treatment options and what the outcome of these options are. It currently has communities for ALS (Lou Gehrig’s disease), M.S., Parkinson’s disease, HIV, mood disorders, as well as other conditions.
Currently, there are more than 4,300 patients are on the PatientsLikeMe ALS (Lou Gehrig’s) site, and it is this community that was tapped into for the study. In 2008, a paper argued that lithium slowed the disease and members of the site began posting their experiences on a spreadsheet to track whether or not there was any truth to the claim. PatientsLikeMe stepped in, offering to conduct a more rigorous study.
The company standardized data collection, and used a questionnaire similar to patient reports from other ALS trials. It asked questions about functions such as walking and swallowing. Participations could choose themselves if they wanted to take lithium (though, they had to persuade a doctor to write the prescription) and they were able to see how others partaking in the study were doing. Real time. This might sound great, but it is a big departure for typical studies in which both doctors and patients are blind to who is receiving the drug. To help avoid reaching false conclusions, PatientsLikeMe matched 149 patients taking lithium with at least one other ALS patient who did not take the drug. Overall, there 447 control patients.
It is by no means a perfect clinical trial. Nor, is it likely that social media will be a replacement for traditional clinical studies. However, as noted by Paul Wicks, a co-author of the paper, in a Wall Street Journal article, social network studies may be useful for testing drugs and compounds that patients are using but won’t attract the interest of big pharmaceutical companies;”sometimes the alternative is not our way or the old way. It is our way or it is not studied at all.”
Quicker, cheaper, and able to reach a more diverse range of topics, perhaps, the approach needs to not be “the old way (traditional clinical studies) versus the new way (studies which incorporate new media)”, but instead: how can old tools and new tools be used to compliment each other?
Regardless, though the study’s goal may not have been to comment on social media, it has proved that social media is not a passing fad, and it continues to wiggle its way into unexpected fields in exciting ways.