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.
A healthy dose of skepticism is in order if you decide to work your way through cancertutor.com. An article by R. Webster Kehr of the Independent Cancer Research Foundation, Inc. claims a natural approach to cancer can cure more than 90% of patients, while more traditional cancer treatment has been shown to cure only 3%. Why the huge difference? In Kehr's view, it's because treating "patients safely with natural products would dramatically reduce the profits of the medical community and the pharmaceutical industry."
Like many other health-related websites, Kehr's site stresses distrust of the medical establishment, patient testimonials, and statistics from individual doctors. Patient testimonials can be persuasive, but they are tough to judge for honesty. Similarly, these statistics, like any medical statistics, need some scrutiny. For example, of the 90% of patients who claim they were cured by a natural remedy, how many were followed up a year later to see if they relapsed? How many may have felt better but never had the necessary X-rays or CT tests to prove their tumors had shrunk? How can you be sure that patients whose tumors actually did shrink were experiencing the benefits of the treatment and not some other developments in their lives? For example, did the person move from a house near a toxic dump to a safer environment? Did the person give up smoking? Factors and variables like these are rarely mentioned when unconventional practitioners discuss "survival" stats.
The fact that alternative medicine websites vary in quality shouldn't discourage you from investigating the field of CAM (complementary alternative medicine). The National Center for Complementary and Alternative Medicine (NCCAM) takes a balanced, objective approach to the subject, posting both positive and negative reports on herb therapy, nutritional supplements, and a variety of other natural remedies.
What separates this site from less credible ones is the quality of the evidence. The website recently reported on a study that found meditation done over an 8-week period reduces the severity of irritable bowel syndrome symptoms in women. This study, for instance, was carefully controlled to rule out other contributing factors that may have influenced symptoms, and it was published in a respected medical journal--The American Journal of Gastroenterology--which means it first had to go through a review by skeptical scientists who would have rejected it if it hadn't met high standards.
Compare the objective approach of the NCCAM website to this one, which promotes Sensa Weight loss crystals. Putting aside the emotional appeal of the sexy, trim bodies displayed throughout the website, let's focus on the evidence presented by the website that this product actually works. In large bold type, the site trumpets that Sensa is "clinically proven to help you lose 30 pounds*!" The proof shows a scientific-looking chart that details a large controlled study in which patients on Sensa lost more than 30 pounds in 6 months. Meanwhile, a control group that didn't take the product lost only 2 pounds, the website states.
Now, start to ask questions: Was this research funded by the company that makes Sensa? (It was.) If so, does the company have a vested interest in ensuring that the results turn out in its favor? Was the research published in a peer-reviewed scientific journal? (There's no mention of journal publication on the website.) Have its findings been duplicated by a research team not affiliated with the company? Equally important, did the people who lost weight on Sensa maintain that weight loss one or two years down the road? These are questions you need to ask before spending your time and money.
Contrast Sensa's discussion about weight loss to WebMD's balanced approach. The article on weight-loss supplements pictured above presents the pros and cons in plain English so you can make an informed decision.
For instance, here's an excerpt from the site's discussion of green tea: "Although [the nutritionist Toby] Smithson cautions that there are not enough human studies to prove the effectiveness of green tea extract as a weight-loss supplement, she tells WebMD '...there is some thought that regular consumption may promote weight loss by adjusting resting energy usage and increasing the use of energy.' "
The language here is optimistic but cautious. It suggests that some experiments might support the use of green tea for weight loss, but it's also clear that there's not enough human data to prove its effectiveness.
It's also important to understand the difference between animal versus human research. As you look through health-related web sites, you'll likely find many claims of product success based on "solid scientific evidence published in respected journals." But often the research has been done using only mice. That's hardly proof that the same results will occur in people.
WebMD also earns points for including a list of sources at the end of the article, so users can do their own research on the credibility of the reports cited.
The web is full of articles about the benefits of nutritional supplements, and there's good research to suggest some of these supplements can in fact help prevent and treat certain diseases. But many consumers wonder about the quality of the specific brands that they see in the supermarket or online. Does that tablet actually contain 500 mg of vitamin E as listed on the label? Are there any unsafe contaminants in that calcium pill? At least one website can help answer these questions.
ConsumerLab.com does disintegration analysis on numerous products to determine whether they actually dissolve once they enter a person's digestive system or pass through whole. It also contracts with independent laboratories that perform a variety of other tests to verify that the dosage on the label is accurate, for instance, or to check for lead contamination.
One recent analysis of Omega-3 fatty acid supplements reported on the site found quality problems with 7 out of 24 products. Problems included a product with less Omega-3 fatty acids than cited on the label, a children's fish oil formula that was spoiled when purchased, and an enteric-coated fish oil soft-gel that released its oil too early. (Enteric coating prevents a capsule from breaking down until it reaches the small intestine.)
Most physicians are much too busy to keep up with all the latest medical research and innovations, and even their online reference tools can sometimes be outdated or too narrowly focused to cover every patient's unique situation. Unfortunately, some clinicians can also be quick to dismiss potentially helpful therapies that are unfamiliar. If your doctor has exhausted all treatment options and you're still suffering, perhaps it's time to think about looking for a clinical trial.
The federal government keeps an online database called clinicaltrials.gov, which lists federally and privately supported clinical trials conducted in the United States and around the world. It provides information about each trial, including its purpose, who may participate, locations, and phone numbers for more details. The site, however, also cautions: "This information should be used in conjunction with advice from health care professionals."
A search for trials for patients suffering from fibromyalgia--a mysterious disorder that causes musculoskeletal pain, fatigue, and localized tenderness--revealed several studies testing the value of acupuncture, and another study examining whether vaccinations play a role.
Evaluating medical websites can be a full-time occupation. Fortunately, there are information professionals who are up to the task. CAPHIS, the Consumer and Patient Health Information Section of the Medical Library Association, puts out a useful list of trustworthy health websites and categorizes them by specialty, including women's and men's health, parenting and kids, drug information, and senior health.
The Health on the Net Foundation outlines 8 attributes that a health-related website should include to be considered trustworthy. Sites that follow this "code of honor" can qualify for the foundation's seal of approval, indicated by the HONcode icon on certified sites.
To qualify, a website must be authoritative and maintain complementarity, which means the information should support and not replace the relationship you have with your doctor. The site should also provide attributions for the statements it posts. A page on the site puts it this way: "Where appropriate, information contained on this site will be supported by clear references to source data and, where possible, have specific HTML links to that data. The date when a clinical page was last modified will be clearly displayed..."
Other criteria to earn the HONcode icon: financial disclosures should be provided to identify any funding sources; advertising and editorial content should be separate and clearly marked. And perhaps the most important requirement is something the foundation calls justifiability: "Any claims relating to the benefits/performance of a specific treatment, commercial product, or service will be supported by appropriate, balanced evidence..."