Some months ago, the Speaking Healthcare blog explored the increasing popularity of emerging social media as a tool for enabling patients to take a more involved and active role in their own healthcare. PatientsLikeMe.com, which was highlighted in that post, is continuing to blaze that trail.
The site, a healthcare data-sharing platform, recently conducted an online trial in which they sought to assess the clinical benefit of an unapproved therapy for amyotrophic lateral sclerosis (ALS). The study analyzed the relevant discussions on the site and included some 600 participating patients.
The results, recently published on Nature Biotechnology, drew on millions of data points and concluded that there was “no effect of lithium on disease progression.” This confirmed the results earlier found through traditional clinical trials.
The question being asked now is whether such online trials and studies driven by patient social networks can or will be a reliable option going forward. There are obvious upsides to using online communities in clinical research, including speed, access to rare patient populations, and availability of control participants. Clinicians or and even patients could one day run trials. (Read more in a recent Wall Street Journal blog post.)
Social media is transforming how we communicate and stay connected, be it among friends or participants in the “Arab Spring” protests. There is no reason to believe that such technological inroads won’t also impact how we think about healthcare.
Till next time,
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