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New ventures capture adverse drug effect reports


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New ventures attempts to fill in the post-marketing vacuum by capturing data about adverse drug effects from the Web. You can sign up on Treato http://treato.com/ and report your own experiences.

Searching Social Media for Drug Side Effects
By John Tozzi Businessweek.com

May 15, 2014

For decades, pharmaceutical companies and regulators have relied on reports from doctors and patients to monitor the side effects of drugs. Although the U.S. Food and Drug Administration collects hundreds of thousands of these records each year, that’s a sliver of patients’ negative experiences. Researchers estimate more than 90 percent go unreported. It can take years for the FDA to detect a pattern of problems that leads to changes in how a drug is prescribed.

Some technology companies are betting that combing through patients’ social media posts will yield crucial insights that drugmakers will buy. “Hundreds of millions of people are waking up every morning and writing about their personal experiences,” says Ido Hadari, chief executive officer of Treato, a six-year-old startup based outside Tel Aviv. Treato scours thousands of sites for patient feedback, from Facebook (FB) and Twitter (TWTR) to small patient forums. The challenge is to extrapolate meaningful signals from all that noise, says Hadari....

Researchers from Boston University, the FDA, Harvard Medical School, and other institutions examined 6.9 million Twitter posts over seven months and identified 4,401 tweets that seemed to describe the types of side effects worth reporting to the FDA, known as “adverse events.” Their study, published in the journal Drug Safety last month, found that the proportion of tweets about particular types of complaints, such as gastrointestinal problems or psychiatric effects, roughly mirrored FDA data. “Some high-volume products had hashtags for reporting” adverse events, the authors wrote, citing tweets with the hashtag #accutaneprobz as a way to collect reports about acne drug Accutane.

Clark Freifeld, lead author of the Drug Safety paper, says most people won’t fill out the four-page form required to alert the FDA. ....Despite Twitter’s apparent correlation with FDA reports, he says, “there’s still a lot of questions about what kind of signal is there, is it something usable?”

Freifeld is a co-founder of Epidemico, a 10-employee startup created in 2012 using research from Boston Children’s Hospital and Harvard Medical School. With FDA funding, Epidemico has built MedWatcher, an app that lets people search the newly accessible FDA database of side effects for drugs and medical devices. Patients can also report their own experiences through the app, which are relayed to the agency. Like Treato, Epidemico is trying to glean insights about drugs from the Web. Freifeld says two pharma companies he wouldn’t name have signed on for its service.

Treato’s Hadari, whose 40-employee company has attracted $25 million in venture funding, has spent years refining algorithms to weed out spam and translate patients’ expressions into meaningful data. ....

Anyone can search the name of a drug or condition on Treato’s website to get a summary of commonly reported side effects or symptoms, as well as links to posts from around the Web by patients discussing the treatment. The top searches are for pain management, pregnancy, and weight issues.

Hadari says the site got 20 million unique visitors last year. Nine pharma companies pay Treato for more detailed analyses of what patients are saying about their drugs: how they’re using the medication, what reactions they experience, or why they switch from one pill to another.

Scanning the Internet for drug safety data may put companies in uncomfortable new territory. When drugmakers learn of adverse reactions from doctors or patients, they’re required to relay the reports to regulators. That obligation extends to companies that host forums to promote medications, says Rick Huddleston, a 33-year veteran of Eli Lilly (LLY) who advises pharma clients at consultant YourEncore.

But does a drug company have to tell the FDA every time it sees a Twitter or Facebook post that mentions medication side effects? Epidemico’s Freifeld says his company must be judicious about how the information it collects is shared with pharma clients because they “need to be careful about what their regulatory obligations are.” Huddleston says drugmakers are also worried that they might be required to report possible problems they learn about on the Web. “The industry is a little bit hesitant to go into that space,” he says.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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This is good. The internet is brilliant because more and more stories are going to emerge until it gets to a point where people are going to HAVE to take notice. I hope it reaches the stage of getting onto the news channels. Then maybe we will be believed at last. I like to think that the day will come when we will all receive a massive apology for the abuse we've all received on so many levels.


Right, I'm getting onto Treato.

The only way out is through.


Aug 2013 - Augmentin leading to akathisia

Sept-Nov 2013 - Citalopram 20mg, severe reaction, off at 5mg. Valium 4mg, prn

Oct 2013 - 5 zopiclone tablets, 7.5mg

End Nov 2013-end Feb 2014, Seroquel, top dose 150mg, off at 25mg

End Nov 2013-early march 2014, Zoloft 100mg top dose, off at 25mg

End Dec-2013-early April 2014, lorazepam 1mg prn

April 3rd 2014 zoloft 5mg for a few days. 18/4/14 - zoloft, 1mg. Came off at 0.35 mg,14th June 2014

29 June 2014 - 1mg lorazepam, last ever

29 June 2014 - med free

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