Drug-makers Skittish About Social Media's Role In Clinical Trials

Drug-makers and researchers are growing increasingly concerned about the potential effects social media might have on the structure of clinical trials, the Wall Street Journal reported this week. As more patients begin openly sharing reactions to medicines online and giving tips to others on how to be recruited for trials, researchers worry that trial results could be jeopardized and that patients’ safety could be threatened.

The conventional wisdom of clinical trials is that it’s best if everyone remains “blind.” Participants in a study should not know if they’re receiving experimental treatment, placebo, or traditional treatment and should not possess any potentially biasing information that could affect the reliability of their results.  This was easily managed with the only sources of information came from doctors, friends, family or waiting rooms. However, now, the internet, which boasts its multiple social media platforms, blogs, and online forums, has emerged as a source of healthcare information that may jeopardize the efficacy of clinical studies, the WSJ says.

According to a study conducted by Pew Internet Project in 2013. 59 percent of American adults use the internet to find healthcare information. In addition, websites such as inspire.com and patientslikeme.com, offer a forum for people to connect and share information about their experiences in healthcare, including clinical trials.

Dr. Craig Lipset, head of Clinical Innovation at Pfizer, highlights the primary risk of the “online chatter” which is that, “Patients who share too much about the trials could effectively chill a new drug before it ever gets to patients by misinterpreting early signals.”  However, he goes on to say that regardless of drug-makers’ involvement, the information is out there. “People are going to talk,” Lipset says. If the information is already out there, why not use these social media platforms to benefit research?

So far, however, these advantages are not clear, and many drug-makers fear overstepping their bounds and running the risk of FDA fines  for promoting a product off label. Though the FDA has expressed its commitment to this issue and will continue to develop guidelines for the use of social media with drug trials, as of now, the waters are mostly unchartered. The consensus seems to be that, as a recent Tufts Center for the Study of Drug Development survey shows, the negatives outweigh the potential positives and most drug-makers would rather stay out of it.

It remains to be seen, however, just how long they will be able to look the other way. The success of any clinical trial hinges on researchers ability to recruit and retain patients. Recruitment rates for clinical trials are low, and social media platforms represent one way for pharma companies to educate consumers about clinical trials and their lasting value. Furthermore, if drug-makers could succeed in demystifying the process of clinical trial participation, more people might be willing to volunteer.

“Like it or not, social media communities as a forum for interaction and engagement are here to stay,” says Ken Getz, the director of sponsored research programs at Tufts. While pharma’s involvement may seem inevitable, most are currently proceeding with caution.