Internet medicine: Top sites and tips
Bill Perdue came home from the doctor’s just before Christmas, 1997 with a devastating prognosis. A condition called Barrett’s esophagus had seriously worsened, with cancer the likely outcome.
He would probably have to have his esophagus -the roughly nine-inch-long tube leading to the stomach – removed along with a portion of his stomach.
The risk was serious and, at the very least, his lifestyle would be seriously impaired.
He kept quiet over Christmas so as not to upset his wife. In January, he searched the Internet for anything on Barrett’s’ esophagus, and found an article about a non-surgical treatment called photodynamic therapy.
When he went for an appointment with the surgeon, “I tucked the article in my back pocket.” After outlining the surgical options, “to my total surprise,” said Bill, the doctor added, “There is a non-surgical procedure.”
“Is this it?” said Bill, pulling out the article. “Yes, that’s it,” said the doctor surprised. “That’s for me!” Bill said.
He eventually received two doses of the new drug, enduring the minor inconvenience of walking naked past the window of his Oakville, Oario, home to allow sunlight to ‘bleach out’ a light-sensitizing drug that is part of the treatment.
Bill, fit and well again, was one of the stars at a Canadian Cancer Society press conference pointing up breakthrough Canadian research on photodynamic therapy. It’s now being used to cure more and more patients with early-stage cancer. (So far, it’s only covered by Quebec’s government health plan.)
Bill is also a walking advert for Internet medicine. Like many patients these days, he had used the Internet to inform himself on treatment options even before arriving at the surgeon’s office.
Treasure of information
Health, in fact, is one of the major reasons people surf the Internet. From the newest research to listing support groups, it’s a treasure house of health information. However, because no one has to check or approve what is posted on the Internet, it is also rife with hokum and hucksterism.
When, for instance, I punched in the name of a notorious quack cancer ‘cure’ that has brought heartbreak and financial ruin to thousands of patients, I brought up dozens of convincing-sounding testimonials.
So how is a person to know what’s true?
Dr. Barbara Whylie is director of medical affairs for the Canadian Cancer Society. She offers this advice:
- Look first at who is providing the information. “Check the source. Is it unbiased?”
- Remember that anything you read on the Internet should be taken only as information – not advice. Before acting on Internet information, consult your doctor or a health professional (In the case of cancer queries, the CCS has a toll-free line, 1-888-939-3333).
- Check that the information is up to date, and that it applies to Canadian, rather than just American, situations.
Useful as the Internet may be today in medical matters, it will in future, according to a recent editorial in the British Medical Journal, “have a profound effect on the way that patients and clinicians (doctors) interact.”
The author, Dr. Alex Jadad, head of the health information research unit at McMaster University, in Hamilton, is already working on an Internet coaching program that would ask patients questions about lifestyle and symptoms as well as directing them to web sites containing useful information.
“At some point,” says Dr. Jadad, “patients may have to learn more about their own conditions than their clinicians (doctors). That’s because, for them, their case is their only case. For the clinician, their patient’s case is one of many.”
Dr. Jadad is convinced that doctors will come to see the well-informed patient as an ally, not a threat, allowing physicians to focus on the important questions during their time with the patient.
Even today, it is ridiculously easy to find reliable information on the net.
- A great starting point is the Canadian Health Network (http://www.canadian-health-network.ca), in which Ottawa is investing $32 million to put us in touch with 400 health organizations and some 5,000 health information sources.
- Another Canadian site, Sympatico’s Healthy Way (http://www1.sympatico.ca/Contents/health/), boasts around 10,000 links.
Or you might want to go direct to some of the major sites dealing with specific diseases.
- The Heart and Stroke Foundation site (www.hsf.ca) is one of the brightest and most appealing I know of, as well as providing every sort of information from heart-friendly recipes to the latest heart studies.
- The Canadian Cancer Society site (www.cancer.ca) is useful but less informative with the facts on only the commonest types of cancer.
But you’ll have no trouble getting the whole story when you cross the border, electronically speaking, and tap into some of the biggest names in U.S. medicine.
- Who would have thought a few years ago, for instance, that we could plug into the Mayo Clinic (www.mayohealth.org), and have our questions personally answered by e-mail? The Mayo sites, like many of the big U.S. sites, is like a daily health newspaper, with lots of interesting features about nutrition, exercise and general health matters as well as the latest studies on particular diseases.
- The most popular site of all (www.drkoop.com) carries the name and reputation of the former U.S. Surgeon General, Dr. Everett Koop, though I had reservations about weight loss advice on that site being sponsored by a food supplement company.
If you want it from the horse’s mouth, you can check out sites doctors themselves use:
- National Institutes of Health (www.nih.gov/health)
- Medscape (www.medscape.com)
- National Library of Medicine (www.nlm.nih.gov)
- Mediconsult.com, (http://www.mediconsult.com), on the other hand, tracks clinical trials, is rich in support groups and describes itself as “a virtual health centre.”
I also check the reports of two of the world’s best medical journalists:
Bill Perdue still occasionally checks out health issues on the Internet. “Today it behooves anyone to look after themselves as much as possible,” he says. “The more informed you are as a patient, the better the questions you can ask.”