"Unreported Side Effects of Drugs Found Using Internet Data"

From John Markoff in the NY Times:

"Using data drawn from queries entered into Google, Microsoft and Yahoo search engines, scientists at Microsoft, Stanford and Columbia University have for the first time been able to detect evidence of unreported prescription drug side effects before they were found by the Food and Drug Administration's warning system.

"Using automated software tools to examine queries by 6 million Internet users taken from Web search logs in 2010, the researchers looked for searches relating to an antidepressant, paroxetine, and a cholestorol lowering drug, pravastatin. They were able to find evidence that the combination of the two drugs caused high blood sugar.

"The study, which was reported in the Journal of the American Medical Informatics Association on Wednesday, is based on data-mining techniques similar to those employed by services like Google Flu Trends, which has been used to give early warning of the prevalence of the sickness.

"Currently, the F.D.A. asks physicians to report side effects through a system known as the Adverse Event Reporting System. But its scope is limited by the fact that data is generated only when a physician notices something and takes the initiative to report it...."

"...The researchers first identified individual searches for the terms paroxetine and pravastatin, as well as searches for both terms, in 2010. They then computed the likelihood that users in each group would also search for hyperglycemia as well as roughly 80 of its symptoms — words or phrases like “high blood sugar,” “blurry vision,” “frequent urination” or “dehydration.”...

"...They were able to determine that people who searched for both drugs during the 12-month period were significantly more likely to search for terms related to hyperglycemia, compared with those who searched for just one of the drugs. (Approximately 10 percent, compared with 5 percent and 4 percent for just one drug.)...

"...The researchers said they were surprised by the strength of the “signal” that they were able to detect in the millions of Web searches and argued that it would be a valuable tool for the F.D.A. to add to its current system for tracking adverse effects...."

This is pretty revolutionary, for a number of reasons.

1. People (I'm using a neutral term, rather than patients or victims, although both sprung to mind...) were able to realize that something was wrong, and that there was a pretty good likelihood that it was the result of a drug interaction.
2. Rather than go to the doctor who prescribed the medication and rely on his advice they decided to do some research on their own.
3. Apparently they were pretty good at searching for terms that would produce useful results, given that the researchers were able to back-engineer the process to pretty reliably find these folks.
4. Researchers are figuring out that the stories that people are telling (through what they're looking for via search engines) are pretty reliable. More reliable than a doctor reporting symptoms...
5. It turns out that the plural of anecdote really is data! (Note the author of that piece is a medical doctor, and a "skeptic".)

Perhaps the medical profession will start figuring out that what their patients tell them really is a reliable source of information, and not just the ravings of lunatics.

One needs to be skeptical, but one also needs to have a good understanding of what the scientific process actually entails. Anecdotes can be valuable sources of information, if they come from a reliable source.

Medical doctors who are willing to treat you as a partner in the health process can be a huge help: they generally have a lot of experience dealing with this stuff, and so long as you recognize the flaws in their profession, can be very valuable. Especially when dealing with trauma.

I'm a big fan of Dr. Google, if you've not figured that out already. I've used it a number of times to determine in real-time that the advice I was getting from a Dr. was not correct.

My "Are Fevers Paleo" post was a compendium of research that I did when my younger daughter came down with dengue hemorrhagic fever. Our pediatrician (from Harvard, and a vegetarian, which is two strikes but we keep her anyway) was upset that I refused to put her on ibuprofen to control the fever. (She was running around the house yelling about spiders at one point. It was pretty alarming.)

As the symptoms progressed, and she started getting some bleeding, the doc texted in a panic that we not give her ibuprofen, after telling us for three days that we should. We assured her that we'd been ignoring her advice, and that we'd not been giving her any. Ibuprofen makes bleeding worse...

P.S. Don't forget, you are the long-term test.