I Heard It On the Grapevine
Just because it's published on the Web . . .
By Mary Kugler, BSN, RN,C
About.com Guide to Rare/Orphan Diseases
"I had tried everything, but nothing worked until . . ."
What's the old saying--"Believe only half of what you see and none of what you hear"? Most people look at tabloid magazine stories ("100 Pound Baby Born") with skepticism. They recognize advertising ploys and can tell the difference between a news story and an infomercial. Then why are many people, especially those with rare diseases, eager to believe everything they see on the Internet?
* It looks impressive and convincing. It's in print, maybe on a fancy-looking site. It seems to be "published." It's "on the Internet."
* Some people are looking for an answer, any answer. Many patients with rare diseases haven't found satisfaction with established medicine. Maybe they've had bad experiences in their encounters with medical professionals. Perhaps no one has been able to diagnose the condition they have, or else there have been no answers to questions about how the disease will affect living.
* Conventional treatments just haven't been working. Or maybe there isn't any treatment available at all for a particular condition. Some people get to a point where they'd be willing to try anything to get relief, even if it means suspending their better judgment.
* People lose their perspective when using the Internet. Most people don't view the Internet as a communication tool, like phone calls, television, books, magazines, and direct mail advertising. Since the Internet reaches out to people, it can be used wisely, poorly, or even criminally.
How to be a savvy Web consumerIf you were looking for information on a particular car, for example, you'd perhaps ask your local mechanic, read the manufacturer's brochure, and check Consumer Reports. You'd compare all the information you found and form your opinion.
This is the same tactic to use with medical information. Information on a Web site should be compared with your doctor's advice and information in medical books or other reliable sources. Print out what you find on the Internet and bring it to a doctor's appointment so you can discuss it and ask questions.
Another important tool for Web use is to have a critical eye. Examine the Web site you're interested in.
* Who runs the site? Where is the information coming from? Anyone can make a Web page. Is the person behind the site a professional with appropriate medical credentials and/or certifications? If not, you're just reading someone's opinion.
And there are no shortage of opinions out there. There are many theories about what causes different ailments, but not all of those theories have any scientific basis. The two examples that come to mind are that viruses or bacteria cause cancer, and that AIDS isn't caused by a virus. Both theories have been disproved scientifically, but there are Web sites dedicated to promoting them.
* Is it a business promoting its product? Is there a hidden agenda behind the site, such as a pharmaceutical company trying to advertise a particular drug? These types of sites can still be useful for information, as long as you remember the company is trying to sell its product or treatment.
The end result
The Internet can be a wonderful communication tool. There are many stories of people with rare diseases discovering that they were not alone, or being able at last to find information on their disorder. As long as you maintain a sense of balance and a critical eye, and double-check the information you find with a health care professional, you will avoid the pitfalls that exist in cyberspace.
Information for this article was taken from:
Lindell, Colleen. "Four Steps to Better Search Results on the Internet," Nursing Spectrum Career Fitness Guide 2001.
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