You, a family member, or a friend has been told you have a medical condition you know very little about. Like over 70 million people in the last measured year, you sign on to the Internet, use your favorite search engine, and pull up sites and perhaps newsgroups to learn more. But there are more than 70,000 health web sites. How do you know what you are reading and the data you are gathering contain credible, valid information? Or have you signed on to e-snakeoil.com?
The Internet represents the potential to give the patient the most up to date information on common or esoteric diseases. Knowledge is indeed power, and the sense of patient empowerment is to be encouraged. Physicians should welcome and embrace this exciting medium as a way to treat a more informed patient and family. The problem, of course, is that not all so-called information available on the net is valid or applicable to the individual patient. And dealing with misinformation is one of the most difficult situations time constrained healthcare providers must deal with in this Internet-enabled society.
There are some rules of information gathering on the wild wild net that I would like to share to minimize the probability that one may be led astray with false data and expectations. This could waste valuable time trying to sort out with your doctors what is real and what is hype. And save you the hours it takes to get the data in the first place.
First, remember that lead medical stories on television or even newspapers are always incomplete and often somewhat sensationalized. Getting that same report on an Internet news service does not make it truer.
Second, support groups and disease-oriented newsgroups are very popular and may be useful, but please remember that unsupervised groups are more or less the equivalent of waiting room conversation. That's different from talking to the doctor for the consultation itself.
Third, the most reliable health sites are sponsored by universities or well-known medical groups. That also usually means the web sites' Internet address end in “edu” or “org.” The sites ending in “com” may be excellent, but also imply a business link, which influence content. Always note the site sponsors and who advertises there. You should also see who reviews the site's content. If there are real names and not apocryphal entries, credibility increases. They should offer hyperlinks to original references or other reliable web sites for more detailed information if desired.
Last, print out information to share with your doctor, who then can review the report with you. A cyber-savvy doctor may even suggest reliable sites for you to visit. At the end of lectures I give to doctors, I often include professional web sites for them to use to keep up on new information. The Internet represents a sea change in how healthcare information will be disseminated to patients as well as doctors. We all need to know how to use it to improve the care we receive and give.