Dr. Nanette Santoro, a professor at the University of Colorado Denver School of Medicine, tells the story of Beth, a friend who at age 46 was diagnosed with uterine cancer. In Dr. Santoro's words, "Beth began pursuing all sorts of holistic and 'alternative' treatments for her cancer," despite the fact that the medical experts she consulted recommended a hysterectomy. Instead of following her doctors' advice, Beth went on a strict macrobiotic diet, insisting that it made her feel great. Eventually, the cancer spread to her bones. She became critically ill and died.
While Dr. Santoro does not mention who advised her friend to follow this diet rather than opt for surgery, odds are good Beth consulted health-related websites--and found advice with varying degrees of quality.
Of course, for every story that warns about information found on independent healthcare websites, there are plenty of other stories that support it. Almost everyone can tell a story of someone who has, for instance, learned about a serious reaction to a drug or medical procedure not from his or her doctor, but through the Internet. Other people may have been told by a physician, "There's nothing else we can for you," only to find a clinical trial online that offered hope.
As we all know, the Internet is a mix of trash and treasures--the trick is figuring out which is which. Our goal is to offer some guidelines to help you figure where to place your trust.
When you review any healthcare website, it helps to mentally place the advice you find on a "reliability ladder." The lower rungs represent treatments supported by the least reliable evidence, and the top rungs stand for treatments that have lots of solid evidence behind them.
At the bottom of the ladder are websites that recommend advice or therapies based only on testimonials. Sometimes referred to as anecdotal evidence, such testimonials might come from people who, for example, swear that Vitamin C cured their arthritis. That kind of "evidence" is not trustworthy, in part because there are many other factors that can contribute to a decrease in joint pain: Less stress, changes in weather, and variations in physical activity level are just a few.
At the top of the reliability ladder are treatments that have been subjected to rigorous testing in large groups of patients in double-blind, placebo-controlled clinical trials. In these experiments, both the patient and the doctor are blind to who's getting the experimental therapy and who's getting a sugar pill, so the patient's expectations don't trick the body into improving despite the fact that the treatment has no physiological benefits.
The middle rungs on the ladder include other types of scientific evidence, like animal and test-tube experiments, or controlled open clinical experiments in which there's no placebo blinding. Each type of evidence has some merit as you decide what's worth investigating.
With these guidelines in mind, let's take a look at some health-related website examples.