The virtual trial has barged into drug development, and social media have made both trials and trial "findings" accessible to all. PatientsLikeMe, Facebook and Twitter are all at once empowering patients and worrying doctors, says Scientific American. Drug development appears to be becoming "an open-source and collaborative effort."
Scientists and clinicians are finding themselves in the unfortunate position of having to defend the centuries-old and time-tested means of scientific process and peer review. However, this traditional process is also time consuming--something understandably loathed by those with a terminal illness who may feel they have little to lose.
ALS researcher Richard Bedlack of Duke University notes in the article that while the Internet is useful for sharing information, it's not very good for verification. He is especially concerned about uncorroborated results that create an opportunity for fraud, "giving medical con artists the perfect platform to tout or sell bogus treatments detailed in counterfeit reports, uncritiqued by experts."
In an effort to educate patients about the risks of experimental and even phony treatments, Bedlack has created ALSUntangled--an Internet-based system monitored by scientists who investigate off-label and questionable treatments at the request of patients. It uses social networking tools to collect and review information, and then publishes its findings as open-access articles in the peer-reviewed journal, Amyotrophic Lateral Sclerosis.
- see the article
- here's the site