Online Patient Communities Changing the Nature of Clinical Trials

The Internet may have made us smarter but social media gives us new opportunities to meaningfully connect with communities

From “meeting” new people with similar interests to participating in causes we care about, Facebook, Twitter and more have expanded our relationships and involvement on a global scale. This fact has not been lost on companies and researchers looking to fill clinical trials.

Researchers around the world are conducting more studies than ever before and it’s naturally a challenge to find willing participants. Without enough qualified participants, trials can be delayed or even terminated.1

Enter the global village (aka social media)—and some innovative ways to reach it.

Digital partnerships, like the one undertaken by, WEGO Health and TrialResearch, hope to solicit the help of patient opinion leaders in recruitment efforts. This convergence brings together over 100,000 experts in healthcare social media, opinion leaders and a database with easy-to-understand information about clinical trials.2

Digital partnerships hope to solicit the input of patient opinion leaders in recruitment efforts.

Entrepreneurs have also realized the power of tapping into like-minded communities. PatientsLikeMe offers an online data-sharing platform for its community of people with serious medical ailments that helps individuals manage their conditions as well as assisting clinical trials in recruiting patients.1,3 Acurian provides patient enrollment often using social media and improves participation through better engagement and retention.1,4

Clinical Trials GPS makes finding and tracking studies to participate in easier than ever including taking location into account.1 The U.S. government is getting involved with the National Cancer Institute’s (NCI) app allowing users to check out the NCI clinical trials database, save their favorites and share on social media.1

While these online tools can be useful when it comes to recruitment, researchers have found it can also lead to some headaches once trials are underway especially when sharing becomes oversharing.

Many clinical trials rely on researchers and subjects not knowing if they are receiving the experimental treatment, standard therapy or a placebo. However, with online forums, blogs, Facebook groups and more at their fingertips some patients in trials for multiple sclerosis, hepatitis C and Lou Gehrig’s disease (amyotrophic lateral sclerosis) found themselves detailing their symptoms to others online in an attempt to compare and uncover whether or not they were receiving the trial medication.5

That’s not all.

Some patients have shared tips on ways to get accepted into trials even if they don’t meet all the criteria. Others, perhaps frustrated with the often lengthy timeframes involved in clinical studies, have collected and shared data during the trial to try to get a sense whether the treatment will be successful.5

It’s understandable that researchers and pharma companies would fear these types of behaviors because they could jeopardize both the trial outcome and the patient’s well-being. Encouraged by information online (that may or may not be accurate), patients might jump to conclusions as to whether or not they’re receiving the experimental treatment. If they think they are not, researchers worry that they could quit the trial prematurely and threaten its ability to be completed. Experts are also concerned that by reading about others’ experiences online patients could be influenced into reporting incorrect symptoms.5

Despite knowing the risks associated with these issues, patients aren’t about to go back to the dark ages of pre-Internet. Websites provide valuable information and social media and other forums allow important access to advice, support and community from others who know what they’re going through. A good percentage would likely quit a clinical trial before agreeing to limit their interactions online.

So what’s the answer?

Many believe it lies in education—for everyone. For researchers, this means understanding the benefits patients receive by sharing their experiences on social media and ultimately changing their expectations to fit this new normal. Patients, however, must also realize the power of their words. One person’s comments can have far-reaching and unintended consequences ranging from changing someone’s thoughts or feelings to actually spurring them to take an action that could affect the result of a clinical trial, impact the future of a treatment and perhaps most dangerously, endanger the trial participants.5

By recognizing this issue, organizations like the Center for Information and Study on Clinical Research Participation (CISCRP) are working to get the word out. Through its Speak Out, But Speak Smart website, the CISCRP provides videos educating people about how their words could negatively influence others’ interpretations of their symptoms and even affect the outcome of the trial.6

The Internet and social media’s ability to connect people is amazing. With its popularity and global reach it’s very likely its impact on clinical trials recruitment will be too.

Reviewed and amended on August 3, 2015



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In this context it seems to me worthwhile mentioning the web platform existing since about 10 years and collecting usefull information by patients themselves on their disease state which could be leveraged for modernizing the design and conduct of clinical trials.

By Moeckvo1 on 10 June 2015 03:54 AM

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