Home The Washington Diplomat September 2009

Surfing for Answers on the Net,Or Sinking in Bad Information?

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Five years ago, I found a suspicious lump in my breast. After a mammogram and an ultrasound, the radiologist recommended that I meet with a breast surgeon for a biopsy. Terrified, I passed the time waiting for my appointment doing what many people do these days when they have a health concern: surfing the Internet.

I compared my mammogram films with images I found online, trying to convince myself that mine looked much more like the ones labeled “benign.” Then I got my radiologist’s report and looked up two words from the conclusion, “spiculated margins.” The Internet told me that those words were not a good sign. When the diagnosis of breast cancer came back from my biopsy, I hit the Web again, looking for treatment options, plugging in information from my pathology report to find out prognoses, and seeking support on message boards at breastcancer.org.

This is health care in the 21st century — plugged in 24-7. According to the Pew Charitable Trusts Internet and American Life Project, 80 percent of American adults have searched online for information about at least one of 17 health topics listed.

But is it a good idea? And how does your doctor feel about it?

After all, there’s no filter on the Internet. Anyone can publish anything online, and it’s often hard to distinguish a reputable site with stringent medical review from something thrown up by an “alternative practitioner” peddling the latest shark cartilage or peach pit solution to cancer or other ailments. (If you’re old enough, you may remember the peddlers of Laetrile — basically vitamin B17 — as a cancer cure in the 1970s. Imagine how much bigger they would have gotten had they had the Net to hawk their “cure!”)

Fortunately, it seems that most people are using the Internet sensibly when it comes to researching their health. In the same Pew survey, only 3 percent of adults said that they or someone they know has been harmed by following medical advice or health information found on the Internet, a finding that has remained stable since 2006. By comparison, 42 percent of all adults knew someone who had been helped by Internet health information, up dramatically from 25 percent in 2000.

The Pew survey’s findings seem to indicate that most people use the Internet to get information to help them maintain their health, or to provide new information to ask their doctor questions, or to get a second opinion — all pretty much positive developments. And although they’re using the Internet, people still cite their doctor as their number-one source of health information (86 percent of survey respondents included a health professional when asked about their key sources of advice on medical issues). So it seems that people aren’t substituting online medical advice for the real thing, but rather using it as a supplement.

But the problem can come when patients don’t tell their doctors what they’re learning online. In 2007, Pew’s Susannah Fox told National Public Radio that many “e-patients” say they don’t always talk to a doctor about their Web research, feeling nervous about “challenging” the doctor.

And it’s true that some doctors don’t like to be challenged. In a November 2007 article titled “When the Patient is a Googler,” Time’s medical writer, Dr. Scott Haig, wrote a critical and demeaning account of a patient who had (horrors!) looked up his qualifications online and even read a paper he had published, calling Googling patients “brainsuckers.”

But more and more doctors are changing their attitudes toward patients who use the Net. Although a 2001 study found that 80 percent of doctors actually cautioned patients not to go online, Pew’s Fox reported that a 2005 study from the National Cancer Institute found that most doctors want to hear from their patients about the online research they’re doing.

Indeed, it appears that good doctors should welcome Internet users — a 2007 study from the University of Wisconsin-Madison’s Center of Excellence in Cancer Communications Research found that although frequent use of online information services was associated with a poor doctor-patient relationship to begin with, “e-patients” also became much more satisfied with their doctors as the relationship progressed.

But there can be problems for the many people who don’t vet the sites they’re using. In fact, only about 25 percent of online health information seekers check the source and date of the information they’re getting either “always” or “some of the time,” according to Pew.

So if you’re going to go Googling your latest symptoms, how can you be sure you’re getting accurate information? Stick with major sites affiliated with reputable organizations — those that conduct regular medical reviews of their content. These include: WebMD (www.webmd.com); the Mayo Clinic (www.mayoclinic.com), and other sites run by major medical centers such as Johns Hopkins and the Cleveland Clinic; clinicaltrials.gov, a good source of information about the latest research trials that may be open to you; and disease-specific sites run by organizations such as the American Cancer Society (www.cancer.org) and the American Heart Association (www.americanheart.org).

Whatever you find online, don’t hesitate to share it with your doctor. Your doctor may disagree with the article you bring in, but he or she should always be willing to discuss what you’ve found respectfully and answer your questions, without dismissing you as a “brain-sucking” Googler. And if your concerns are dismissed, it’s time to find a new doctor.

About the Author

Gina Shaw is the medical writer for The Washington Diplomat.

Last Edited on July 7, 2014