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Finding Adverse Event Data on Social Media

Posted on September 19th, 2016 by in Pharmacovigilance

Social Media

Have you ever complained about an unpleasant health issue (maybe a strange ache or sudden difficulty sleeping) on your Facebook page? Ever tweeted a picture of a swollen or discolored part of your body? Even if you haven’t, you almost certainly have seen others in your social media network do so.

80% of internet users have looked online for health information in the past year. 16% have specifically gone looking online for people who might share their same health concerns. Social media in particular, which is now utilized by 74% of online adults and increasing in use by all age groups, is a virtual gathering place where people have become comfortable sharing all kinds of information about themselves – including the details of their physical health.

That’s why the pharma world can no longer ignore social media sites as places to find vital data on adverse events (AEs). However, there is no question that this extremely informal environment is a daunting place to go to gather medical information.

Into the Wild (Digital) West

A systematic review recently conducted by Su Golder, Yoon Loke and Gill Norman of the University of York sought to summarize the prevalence, frequency and comparative value of information on the adverse events of healthcare interventions from user comments and videos in social media. By searching several databases, doing internet searches and contacting experts, they found 51 studies that evaluated reports of AEs on numerous social media sites.

Dr. Golder describes searching a database like Medline or Embase as “a walk in the park” next to searching social media, where people often communicate in a way that defies expectation. For instance, in one social media posting, she explains that a person says that a medication “zonks” her, meaning that it causes drowsiness. Although many researchers understand this expression when seeing it in context, it’s highly unlikely that it would ever occur to a pharmacovigilance professional to do a search including the word “zonks” when searching for adverse events!

More Mild than Severe

Dr. Golder’s review confirmed that a large number of people are using everything from major social media platforms like Facebook and YouTube to smaller health-related forums like DailyStrength and Ask A Patient to discuss adverse events – and that many of these reports have not been otherwise documented. In fact, the frequency of mild or symptom-related adverse events (e.g., acne, rashes) posted on social media was higher than on other sources for adverse events reporting. On the other hand, the review found that there was a lower frequency of serious adverse events (e.g., stroke) reported on social media.

This is not terribly surprising when we consider that social media is more often utilized for casual chatter and that people are more likely to pick up the phone and call a doctor or family member when experiencing a truly severe or life-threatening issue. But that is not the only limitation to using social media for uncovering adverse events. Biased sample populations, sorting out if posts are genuine, false positive signal generation, and the sheer amount of “noise” that makes it difficult to effectively search social media are some of the other potential problems with using it as a source.

Faster Identification of AEs

Even considering the limitations of social media, it is still well worth utilizing as an additional source for data on adverse events. Given how quickly information spreads on social media, it has the massive advantage of allowing for more rapid identification of AEs, which could potentially even help stop a problem in its tracks before becoming a full-blown disaster.

Dr. Golder and her colleagues feel that their review demonstrated that social media could be useful as a signal-generating source (especially for mild adverse events), help gain the perspective of patients (including an understanding of what is most important to them) and could help formulate and prioritize questions on AEs for future research. Being so vast and untamed, though, makes social media a minefield that many in the industry are still afraid to venture into.

Where Do Things Stand Now?

So far there are no agencies that routinely monitor social media. They are being cautious because the ethical considerations in using social media for adverse events reporting are significant, given that much of it is technically public yet personal in nature. As for the obligations of pharmaceutical companies, currently they are not required to seek out AE data on social media, but they do have to report it if they happen to see an adverse event discussed there.

The question of whether social media should be monitored by regulatory agencies or pharma companies continues to be debated, and so far there hasn’t been much research funding on how to handle this complicated aspect of pharmacovigilance. But as social media becomes a method of communication as common as talking on the phone (perhaps more so by now), researchers will have to learn to navigate the minefield so that they can find the valuable nuggets of information that might ultimately save lives.

To hear more about Dr. Su Golder’s findings from her recent publication: “Systematic review on the prevalence, frequency and comparative value of adverse events data in social media” listen to the webinar.


All opinions shared in this post are the author’s own.

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