One of the most difficult meetings I ever held at the FDA was with a group of parents—mostly moms—of teenagers who had committed suicide while taking selective serotonin reuptake inhibitors or SSRI antidepressants. In the wake of a very emotional advisory committee meeting, which was heavily covered by the media, these well-meaning and understandably devastated parents believed that these medicines were the cause of their horrible losses. I listened. Afterwards, I wept. A parent of two children, I cannot even begin to understand their agony.

But as much as they needed to believe that the medications were at fault, the science was never clear. Anecdotal events, even terrible ones, are not science. recent survey published in the Journal of the American Medical Association found that 55 percent of doctors reported at least one parent refusing to vaccinate their child at all in the past year and 85 percent refusing one or more shots. Doctors surveyed said that “Internet searching enables parents to find horror stories about adverse effects from vaccines, including a mercury-laden preservative that, despite studies to the contrary, some people think is linked to a form of autism.”  

All this begs the question, is knowledge power? That depends on whether or not the knowledge is correct. And nowhere is that truer or more urgent than in the life of the 21st century digital health care consumer.

 

As candidates for the White House focus on healthcare reform, millions of Americans resolve to be healthier in 2008. And they are—we are—in ever growing multitudes, turning to the Internet for advice. But is the plethora of online information we’re finding during our intense surfing expeditions correct and appropriate? Who’s minding the store?

 

To determine what patients typically see when searching for information on prescription medications, the Center for Medicine in the Public Interest took a snapshot of the first three pages of Google search results for Crestor, a safe and effective drug used for cholesterol and atherosclerosis and Avandia, a Type 2 diabetes drug. With few exceptions, the information we found appeared legitimate, but had no medical authority whatsoever. In many cases, we found lawyers posing as medical experts.

 

The analysis of search results revealed that online real estate was dominated by websites paid for and sponsored by either class action law firms or legal marketing sites searching for plaintiff referrals. Other sites were sponsored by groups or individuals selling so-called “alternatives.”

 

Real World Consequences

Center for Medicine in the Public Interest also looked at the real world consequences of what happens when decisions are based on incomplete, false, or misleading information. Using SSRIs and vaccines as examples, the center found that basing decisions solely on online hysteria and fear could very well fuel a precautionary principle-based public health crisis.

 

This trend is the result of the rise of what the Center for Medicine in the Public Interest calls the “Insta-American.” Never before has information flowed as freely or as swiftly as today. Today, we expect all their information to come fast and free. We don’t like waiting in lines or plodding through complex reading. And as 60 million Baby Boomers begin to reach the age where health care becomes a primary concern, they are going to want what they’ve always wanted, everything—and right away. When it comes to health care, it’s all about immediacy of access to information.

 

This attitude is downright dangerous when it comes to our health because those filling the need for responsiveness are exploiting anxiety for their own self interest. And they’re using the web to do. According to the Pew Internet and American Life Project, 113 million Americans search online for answers to their health questions. Three quarters of these individuals rarely, if ever, check the sources of the material they find. Compounding matters even further is that it is not clear if checking sources is enough. Even a highly sophisticated reader with some lay medical understanding can find the information presented online confusing.

 

The web is home to many important sources of authoritative medical information including the National Institutes of Health, its related National Library of Medicine and medical specialty group web sites. However, they are rarely the sites that show up or seen first. A simple Google search for Crestor and Avandia side effects reveals the misleading state of online health information. Nearly half of the first three pages of search results belonged to lawyers and attorney referral services seeking plaintiffs for class action lawsuits. 

 

Other sources sold herbal “alternatives” or were run by individuals and organizations ideologically opposed to pharmaceuticals. Most often, these sites positioned themselves as neutral sources or expert advice. According to CMPI, 65 percent of search results are biased or unverified. No official regulatory pages appear in CMPI’s inventory of results for Crestor and Avandia. No pages from professional medical organizations were present either.

 

The Internet can be extremely useful in informing a patient’s discussions with their doctor. It can be a helpful tool to empower an individual in their medical decisions. But it is important to remember that not everything online is true. The Internet has made it easier than ever before for charlatans and quacks to spread fear and misinformation. Mark Twain wrote: “Beware of health books. You might die of a misprint.” The same can now be said of the web.