Ed Silverman | The Wall Street Journal | 30 July 2014
Are patients jeopardizing clinical trials by discussing them on social media?
There is growing fear in the medical community and the pharmaceutical industry that an increasing number of people who participate in clinical trials may indeed compromise research by chatting about treatments, side effects and enrollment tips on Facebook, online forums and blogs, according to The Wall Street Journal.
To what extent this is a problem is unclear. But the paper illustrates the issue with an anecdote involving a woman named Jeri Burtchell. She was enrolled in a trial for an experimental multiple sclerosis drug and convinced she was getting the new medicine, which was not the standard therapy that some patients were randomly assigned to receive.
So what happened? She bumped into the lead investigator for the trial in an elevator and told him that she thought she knew which drug she was getting. The doctor stopped her from telling him more and a nurse later explained to her that discussing such things could compromise the trial. Just the same, Burtchell went home and wrote about it on a blog called Gilenya & Me.
Patients who share too much “could effectively chill a new drug before it ever gets to patients by misinterpreting early signals,” says Craig Lipset, who heads clinical innovation at Pfizer and has also championed social media as a key tool in recruiting patients for trials. “It’s scary.”