Have you ever looked up an unusual ache or odd sensation to see what might be causing it? I know I’m guilty of it and I’m not the only one. One in 20 Google searches are health-related and more than a third of U.S. citizens use internet search engines for that initial self-diagnosis. But while the wealth of information discovered during any one search may or may not be useful to the potential patient, the information used to search for those symptoms and side effects may be extremely useful to medical regulatory agencies such as the FDA.
Illness and the internet
Today, we’re not only able to search the internet for correlations between symptoms and certain drugs or actions, we can also use symptom checker apps such as the one by the Mayo Clinic to view possible diagnoses or, in the case of prescription drugs, see if anyone else is talking about similar symptons in online support groups.
Health-related searches through Google alone average 8,000 per second. That’s a tremendous amount of data linking symptoms to diseases, side effects to drugs and concerns to any number of physical or psychological ailments. To regulatory agencies such as the FDA, this untapped potential may be incredibly useful in monitoring and discovering the true side effects of any given prescription drug on the market.
Surveying drug side effects
In early June 2015, the FDA held a teleconference to discuss “adverse event trending” with, among others, Google’s senior staff research scientist Evgeniy Gabrilovich.
Although the details of the discussion were not released publicly, Gabrilovich’s strong ties to drug safety surveillance and adverse event trending can be seen in his co-authorship of the research paper “Postmarket Drug Surveillance Without Trial Costs: Discovery of Adverse Drug Reactions Through Large-Scale Analysis of Web Search Queries,” published in the Journal of Medical Internet Research in June 2013.
According to the paper, “Existing drug surveillance mechanisms often depend on the need for medical providers or patients to realize the connection between the treatment and its side effects (adverse or otherwise).”
Gabrilovich’s study, on the other hand, used information from a total of 176 million anonymized unique users to investigate 20 of the top-selling drugs in the United States. Through a series of applied algorithms, his team was able to create “a novel, low-cost method for discovering adverse drug reactions from aggregated Web search data of large populations of Internet users” that showed high correlations between their own findings of drug side effects and the actual known drug reactions. What’s more, the study claimed that while “acute early-onset drug reactions are more likely to be reported to regulatory agencies, we show that less acute later-onset ones are better captured in web search queries.”
Any discussions that might have taken place with Gabrilovich concerning these findings, however, would not have been the first time that the FDA looked into the potentials of medical data mining.
Essure™and other online testimonials already contributing to side effect research
In the FDA’s June 24, 2015, update regarding a review of complications assocated with the Essure permanent birth control medical procedure, it stated that it “conducted a thorough review of information about Essure and the patients who have had Essure since the FDA approved it in 2002.” This review included analyzing “Essure patient reports of problems (including web-based testimonials) and reports of problems submitted to the FDA from other sources, including doctors, patients, and the manufacturer of Essure.”
According to an FDA spokeswoman, the “web-based testimonals” were those of women who’d posted their personal stories about problems with Essure on an established website, providing the FDA with details they might not have received through standard side effect reporting.
Additionally, the FDA has paired with patient networking site PatientsLikeMe to explore how forum discussions conducted by more than 350,000 members could provide additional insight into prescription drug side effects and potential safety concerns.
The FDA’s Chief Health Informatics Officer Taha Kass-Hout has also thrown his hat into the ring regarding the research of web-based side effect monitoring through the paper he co-authored, “Digital Drug Safety Surveillance: Monitoring Pharmaceutical Products in Twitter.”
One of the biggest challenges we face is the underreporting of side effects and other serious complications. It has been found that 94 percent of adverse reactions are not reported. With 70 percent of Americans taking at least one prescription drug and more than half taking two medications, it’s scary to think that only 1.2 million reports have been made to the FDA as of 2013.
If we can’t rely on proactive independent reporting, then it would seem to me that we should be doing everything we can to establish a reliable record of the potential harm that any medical drug or device could cause—and that wealth of information is already at our fingertips.
So the next time you type in a symptom to Google, there’s much more going on behind the scenes, work that will hopefully lead to some needed progress when it comes to tracking serious drug and device complications.