Social Media and Clinical Trials: A Dangerous Combination?

Dear House Rules,

Like all pharma companies, my organization conducts numerous clinical trials. Recently, I’ve been talking to industry colleagues about introducing social media to the mix – especially to boost recruitment. Their recommendations vary from “Go for it!” to “Don’t touch it!” Social media’s not going away. How do I figure out the best way to apply it during clinical trials?  


All the World’s a Laboratory…  

Dear Laboratory:

Not only is social media not going away, it’s growing every time a new study or poll is published! You’re right to establish a strategy to guide social media usage during the clinical trials your company conducts.  

As you mention, recruitment can be an important positive way to use social media. Twitter feeds, Facebook ads, targeted text messages… all can be viable sources of interested trial candidates. For people who wish to see if they qualify for and would like to take part in a certain clinical trial, the site jalr.org (Just Another Lab Rat – its real name) even provides links to commercial sites, including details about factors such the quality of the Wi-Fi and food and the speed of payment, allowing potential participants to be ‘informed shoppers.’1 This type of social media usage has been ongoing for several years, and large organizations are mostly comfortable with it. 

After the recruitment stage, however, there can be lots pitfalls. Be careful of the following: 

Participants sharing study experiences online  

Patients have posted data on efficacy and safety of an investigational drug to public and social websites through Twitter feeds and other social channels. Certain diseases have robust online communities, which can make this occurrence more likely. For example, people with hepatitis C (a condition with a strong online community) self-identified as being involved in a particular trial, and then posted discussions aimed at identifying who was receiving active drug, and who was receiving placebo – including posting photos of the medication involved. (1)

There can also be discussions of side effects, with community members – who use pseudonyms or avatars, so the trial sponsor cannot identify them – advising others to stop taking the study medication. Threads have also included discussion?about how and when to get certain lab tests outside of the study to determine whether subjects were receiving placebo, so that they could drop out of study if not on the investigational agent.(1) All of these social media-based practices can seriously compromise the aims of a clinical trial. 

Patient safety and patient bias concerns 

The possibility that patients may discuss adverse events online but not inform Principal Investigators is causing concern among sponsors, investigators and contract research organizations (CROs), primarily due to the risks to patient safety and safety reporting, There is also, of course, the potential for patient bias. Data may be aggregated in an attempt to predict outcome of trials still underway, with non-subjects publishing conclusions about results while the study is still ongoing. 

This issue was highlighted in a?recent Wall Street Journal?article, which quotes Craig H. Lipset, head of clinical innovation at Pfizer as saying clinical trial participants who share too much “could effectively chill a new drug before it ever gets to patients by misinterpreting early signals.” In an?opinion piece?in?Nature Medicine,?Lipset asserted that “clinical trial sponsors must work with regulators to define pathways to monitor social media use by trial participants to understand if conversations on the internet will affect their interpretation of study results.” (1)

Future solutions for a changing digital landscape 

Although at times, the internet can seem like a vast, unregulated Wild West to pharma companies like yours conducting clinical trials, there are easy safeguards you can put in place. In the case of orphan diseases with vocal advocacy groups, you might consider creating specific chat-rooms that are moderated, allowing erroneous or inappropriate content to be removed. In addition, you could include a request for patients to disclose their trial experiences only to immediate friends and family in the informed consent form.1  

It will also be important to educate participants about the potential impacts of their online communications. Teach potential participants about how their words can affect the outcome of clinical studies, illustrating the potential impact of discussing eligibility criteria, sharing side effect information, and speculating on active drug vs. placebo. The words they use online can change how someone feels, the results of a study, and even the future of the medicine being tested.  

Given the increase in social media use among clinical trial participants we’ve already acknowledged, pharma sponsors and researchers need to be prepared to address participants’ questions, encourage clear ongoing communication with clinical sites, and be aware of any potential impact of social media participation on study conduct and outcomes.  

Xavier Creative House employs several social media experts who can help us craft a social media strategy geared specifically for your company and its clinical trial goals. Give us a call or shoot us an email today!  


Reference: 1http://www.quintiles.com/blog/social-media-the-evolving-impact-on-clinical-trials. Accessed September 25, 2017. 


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