Tips for savvy medical Web surfing - CNN.com http://www.cnn.com/2008/HEALTH/02/21/ep.web.sites/index.html
Tips for savvy medical Web surfing
* Story Highlights
* It's safe to trust info from government Web sites, colleges and universities
* The same is true for sites of large medical and research institutions
* Use search engines that screen out unreliable information
* Look at review articles in medical journals
By Elizabeth Cohen CNN Empowered Patient, a regular feature from CNN Medical News correspondent Elizabeth Cohen, helps put you in the driver's seat when it comes to health care.
ATLANTA, Georgia (CNN) -- When Mary Ryan's 4-year-old nephew, Nick, landed in the hospital with a serious infection, her brother called her in a panic. Ryan isn't a doctor. She's not a nurse. She's a librarian. Finding accurate, reliable medical information on the Web can be a daunting task. Nick had cat scratch fever, and for weeks it was impervious to antibiotics. Desperate, the doctor in Nick's small town wanted to use a more powerful antibiotic that might save him -- but also might make Nick deaf. Ryan's brother hoped she could find something -- anything -- that would save his son without disabling him. Ryan asked one of her colleagues, a research specialist at the Texas Medical Center Library in Houston, to search the medical literature. She came up with an article about an antibiotic that worked against cat scratch fever but wasn't toxic.
"We sent the doctor the whole article, and when he read it, he said, 'This is great. I hadn't thought of that,' " said Ryan, the president-elect of the Medical Library Association. Nick took the antibiotic and recovered without complications.
So if you're trying to find medical information for yourself or someone you love, and you're not lucky enough to have access to a professional research librarian, what do you do?
"The Empowered Patient" assumes you already know the basics of good Internet searching: .gov and .edu sites are to be trusted, as are sites for major health centers (think http://www.mayoclinic.com/ and health organizations (such as the American Cancer Society's cancer.org). "But there's so much more you can do. You can take this to a whole new level," says Jan Guthrie, director of The Health Resource, a for-pay medical research service.
So for the Internet searcher hungry for more, here are some tips for being a sophisticated surfer:
1. Use search engines that screen out the garbage for you
There's a lot of junk on the Internet. "It's the wild, wild West out there," says Alan Spielman, CEO of URAC, a company that certifies health Web sites. "You really have to be alert as you go through these sites." To get rid of the junk, use a search engine that looks only at reputable sites that have been vetted by health professionals. http://dirline.nlm.nih.gov/ run by the National Library of Medicine, is one such engine, as are medlineplus.gov and Imedix.com. Healthfinder.gov searches for information on government health Web sites.
2. Find smart bloggers with your disease
Some bloggers do an excellent job of linking to resources specific to your disease. That goes for advocacy groups, too.
3. Invest 30 minutes in the pubmed.gov tutorial
http://www.ncbi.nlm.nih.gov/sites/entrez/ searches the medical literature, but it isn't completely intuitive. It's worth the time to learn how to use it by doing the tutorial.
Nervous you won't understand the technical jargon in medical articles? Don't be, says Guthrie. She advises reading the very beginning of a study and the very end. "The conclusion will tell you whether the treatment they studied was effective, moderately effective, or not at all effective."
In addition, the Medical Library Association, has brochures called Deciphering Medspeak (http://www.mlanet.org/resources/medspeak/ ) to help translate some of the more common medical jargon.
Tara Parker-Pope (http://well.blogs.nytimes.com/ ) , a health columnist for the New York Times, found it useful to specifically search for review articles on pubmed when she was looking for treatments for her mother's esophageal cancer. Review articles give an overview of the latest research on a particular subject. "Review articles are an excellent way to get a lay of the land and to get the big picture on a topic," Parker-Pope says. To find review articles on pubmed, go to the "limits" tab and then under "type of article", check "review."
4. Click on information about annual meetings
For example, let's say you just got a breast cancer diagnosis. You could go to http://www.asco.org/ , the site for the American Society of Clinical Oncology, and look at information on new breast cancer treatments discussed at last year's meeting.
This is the way to get cutting-edge information, Guthrie says. "Information on new treatments is presented at conferences six to 12 months before it's published in a medical journal."
Guthrie says she managed to find out about a new treatment for tendonitis this way. "It wasn't even in the medical journals yet. We found one doctor in New York who was doing it. If I had tendonitis, it might've been worth traveling to him," she says.
5. When in doubt about a Web site, click on "about us"
Sometimes it's clear who runs a Web site. Often it's not. Clicking on "about us" should explain it. Knowing who's behind the information you're reading (especially if they're trying to sell you something) helps you evaluate whether the information is biased. If you can't figure out who runs the site, don't use it.
And here perhaps are two of the most valuable pieces of advice: Use Internet resources in combination. "An advocacy group or a review article by itself is pretty useless," Parker-Pope says. "No one of these works by itself." The second piece of advice: Don't expect the Internet to cure your disease. "I wanted to find the needle in the haystack to cure my mother," Parker-Pope says. "But information doesn't cure cancer. It just leads you to the best doctor and the best options."
Parker-Pope never found the needle in the haystack. Her mother, Karen Parker, died nine months after her diagnosis. But because of what they found out on the Internet, Parker-Pope and her family had confidence she received the best possible care. "And feeling confident in your care is no small thing," she says.
* * *
As a friend's rheumatologist told her, "I have to keep up on 400 diseases, you only need to keep up on one." Therefore, he assumed that she would have information that he had not read yet. The best doctors are those who are open to reading and discussing what the patient researches; there are some who will dismiss anything you find on the internet -- even the online version of a reputable medical journal! -- as not worth reading; those are the doctors who are not worth seeing.
In addition to "savvy bloggers" (and I would recommend, if there's contact information, to contact the blogger directly to ask your specific question; there are topics I'm working on that haven't been posted yet, and topics I haven't even started working on, where I have information that could help answer an urgent question), I would also recommend going to Yahoogroups.com and searching for online support groups.
A friend recently got a diagnosis and we found over 600 Yahoogroups for her condition. She's slowly working her way through the descriptions to see which fits her needs best -- some are for people in a specific geographic area, others are primarily for men, or parents of young patients, or caregivers of bedridden patients. You'll find large groups where the number of posts each day can be overwhelming if you're almost bedridden, and small intimate groups where everyone knows everyone. There may be a group that specializes in politics or advocacy, or a group that specializes in disseminating research (for CFS/fibro, go to www.co-cure.org and sign up for the mailing list, or just search the archives). Only you know what you need: information, companionship, a shoulder to cry on, and whether you prefer 2 posts or 200 posts a day.
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