How social media can help with clinical trials

Enter citizen medicine: How social media can play a role in clinical trials.
Written by Boonsri Dickinson, Contributing Editor

Social networks are changing the way people communicate, shop and work, but now the staid world of medical research is dealing with their promise and potential pitfalls.

In a recent example, a social networking health site called PatientsLikeMe, focused on patients and research tapped the so-called hive-mind to see how lithium affected the progression of amyotrophic lateral sclerosis (ALS).

"This is the first time a social network has been used to evaluate a treatment in a patient population in real time," PatientsLikeMe co-founder Jamie Heywood said in a statement.

With the use of online tools and an algorithm for patient matching, researchers looked at total of 596 ALS participants, to compare patients who took lithium with those who weren't taking the drug. After crunching some numbers, the researchers found that lithium actually had no effect on the progression of the disease.

The results contradicted a 2008 study that claimed that lithium carbonate slowed the progression of ALS. The authors concluded that, "The experiences of patients who try drugs that aren't approved for their disease have the potential to be mined for insights into drug efficacy."

According to The Wall Street Journal, even though lithium didn't appear to slow the progression of ALS, experts cautioned that the PatientsLikeMe study can't detect small effects lithium might have, emphasizing that the small effects can be truly life saving.

While social networks can't replacing double blind clinical trials, it could be a good way to find some answers.

PatientsLikeMe may have 100,000 patients as members and more than 500 conditions discussed on its network, it isn't the only forum for patients. As it turns out, patients are finding the support they need in other places such as HealthCentral, Inspire, CureTogether and Alliance Health Networks.

In a related study, researchers found that social media can actually influence research. For instance, an online demand for a controversial treatment for multiple sclerosis put pressure on scientists and politicians to sway research, even though scientific evidence might be lacking. Patients groups are using tools to communicate, so for the sake of science literacy, scientists should start using social media too.

ALS Study Falls Short, But Use of Social Media Holds Promise [WSJ]

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