TREATMENT
Internet
How to get the best medical advice online
Health-related resources on the internet can be a powerful tool if used wisely
Last Updated: Tuesday, December 30, 2008 | 5:09 PM ET
By Rebecca Ruiz, Forbes.com
The internet has twice saved Jola Stettler's life.
In November 2006, the 39-year-old mother of three was diagnosed with ocular melanoma that had spread to her liver.
"My oncologist flat out told me that there is no treatment," remembers Stettler, who emigrated to the U.S. from Poland in 1994. "He said for me to go home and enjoy with my family whatever time I have left, which could be up to six months."
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Stettler's husband, Marek, couldn't fathom the oncologist's terminal diagnosis and instead turned to the internet. Hours of research led him to Dr. Charles Nutting, an interventional radiologist at the Swedish Medical Center in Denver. Dr. Nutting agreed to treat Stettler, also a Denver resident, with a cutting edge therapy that injects the tumors with radioactive beads to gradually shrink them. A year-and-a-half later her tumors began to grow again.
That's when Marek returned to the internet and discovered that the National Institutes of Health was in the midst of a clinical trial to treat cancer patients with a radical new therapy that uses six times the amount of chemotherapy while not allowing it to enter the body's bloodstream. Dr. Nutting hadn't yet heard of the trial, but agreed to help Stettler participate. Four treatments this year have shrunk the tumors by 75 per cent.
Safe Searching
Though Stettler's case is an extreme example, it is a reminder that online medical resources and advice can be a powerful tool if used wisely. The most reliable and accurate Web sites, blogs and list-serves can lead users to information about prevention, diagnosis, treatment and experts, sometimes helping them to improve their quality of life dramatically.
But internet users will have mixed results when searching the "medical internet" if they don't first establish which sites are most credible, says Dr. Harlan Weinberg, head of the critical care department at Northern Westchester Hospital in Mt. Kisco, N.Y.
Dr. Weinberg spent three-and-a-half years combing through 20,000 possible websites to include in a book on online medical resources. The final list contained just 1,000 sites, each of which met Dr. Weinberg's standards for reliability and accuracy. They include Medline Plus, National Library of Medicine, the National Immunization Program, CDC and MyPyramid, USDA.
He gave greater weight to sites run by respected academic, government, medical and nonprofit organizations and institutions. He also evaluated the validity and timeliness of the information, trying to determine the source and when it had been last updated. These are key indicators of a site's trustworthiness, and ones that users often overlook.
A study conducted by the Pew Internet & American Life Project in 2007 found that while eight in 10 American adults have consulted the Web for health care information, 75 per cent failed to check a source's validity or relevance.
Many users begin their search by typing a few key words into a search engine, but they could be more effective by compiling a list of first-tier online resources. A Google search for diabetes, for example, offers websites for health care media publishing companies in its top three results. But perhaps more reliable is a site run by the U.S. National Institutes of Health, which contains basic research on the disease in addition to information about ongoing clinical trials and alternative therapies.
As in Jola Stettler's case, internet resources can help patients become more active advocates for their own interests. Her radiologist, Dr. Nutting, says internet-savvy patients often find experts and remedies that change the course of their treatment, but that the newfound knowledge should be parsed by a trained professional.
"It can be an overwhelming task for a non-medical person," he says.
Hypochondriacs, beware
A physician's opinion is particularly important, since searching the medical internet can sometimes lead to "cyberchondria," or an increased anxiety caused by reviewing online content.
A Microsoft study of Internet use and medical research released last month found that of more than 11,100 search sessions, 5.3 per cent led to a "query escalation" during which the subject began associating a common symptom with a serious medical condition. When searching for the key word headache, for example, the subject then began querying "headache tumor" and "brain tumor treatment" instead of something more probable like "headache coffee" and "caffeine withdrawal symptoms."
Instead of using the Internet to turn random aches and pains into the worst-case scenario, Dr. Weinberg recommends utilizing it for prevention. This means seeking out accurate information on a number of health issues, including exercise and diet recommendations, weight loss and smoking cessation.
But even when using the Internet for preventive purposes, it's important to consult a physician who will know best how to diagnose and treat various ailments.
"It's a tool," he says, "but you still need to have someone doing the critical medical thinking. Your Internet is not going to provide you that."
