- April 2008 > Wellness Wise
When Mary Ryan's 4-year-old nephew, Nick, landed in the hospital with a serious infection, her brother called her in a panic. Mary is not a doctor or a nurse... she is a librarian.
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.
Mary's brother hoped she could find something -- anything -- that would save his son without disabling him. Mary asked one of her colleagues, a research specialist at the Texas Medical Center Library in Houston, to search the medical literature. She found an article about an antibiotic that worked against cat scratch fever but was not 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 Mary, the president-elect of the Medical Library Association. Nick took the antibiotic and recovered without complications.
If you are trying to find medical information for yourself or someone you love and are not lucky enough to have access to a professional research librarian, what can 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 MayoClinic.com, WebMD.com, etc.) and health organizations/institutions (such as the UT M.D. Anderson Cancer Center, ranked #1 Nationwide in Cancer Care, UT Southwestern Medical Center at Dallas, UT Medical Branch at Galveston, UT Health Science Center at Houston, UT Health Science Center at San Antonio, UT Health Science Center at Tyler, etc.).
"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.
For the Internet searcher hungry for more, here are some tips for being a sophisticated surfer:
Nervous you will not understand the technical jargon in medical articles? "Do not be", says Guthrie. She advises reading the very beginning and the very end of the study. "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" to help translate some of the more common medical jargon.
Tara Parker-Pope, a health columnist for the New York Times, found it useful to specifically search for review articles on Pubmed.gov 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.gov, go to the "Limits" tab and then under "Type of Article", check "Review."
Click on information about annual meetings
For example, if you receive a breast cancer diagnosis, you could go to 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 twelve 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.
Lastly are perhaps the two 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 is not to 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; however, because of what they found out on the Internet, Parker-Pope and her family had confidence she received the best possible care. "Feeling confident in your care is no small thing," she says.
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