First published 6/10/11 on the Healthcare Headaches Blog at US News
A recent survey found that 60 percent of adults have gone online at least once to look up health information. Unfortunately, finding high-quality health websites is a challenge. Several years ago, a review of 79 studies published in the Journal of the American Medical Association concluded that online health information for consumers is frequently flawed, inaccurate, or biased. Based on my experience, the situation isn’t any better today.
Why do some health websites contain misleading information? One reason is that the group or organization running the site may have a hidden agenda. Drug companies often create consumer demand for expensive new drugs by financing groups that promote awareness of a previously unrecognized health condition, a sales tactic known as “disease mongering.” (For example, Dartmouth Medical School researchers have argued that restless leg syndrome became a disease only when a drug was developed to treat it.) Unfortunately, a study published earlier this year in theAmerican Journal of Public Health found that most health advocacy groups that receive drug-company funding don’t disclose that on their websites.
Another reason that websites may contain misinformation is that some groups willfully disregard scientific evidence to promote certain health beliefs. For example, even though the U.S. Institute of Medicine found in 2004, after an exhaustive review of the medical literature, that there is no relationship between childhood vaccines and autism, it’s easy to find websites that claim otherwise. Similarly, although most researchers have concluded that Morgellons disease—a bizarre skin condition that sufferers believe to be caused by an undiagnosed parasitic infestation—is likely to be a psychiatric delusional disorder, you wouldn’t know it by simply Googling “Morgellons.”
Because advising my patients to make an appointment every time they have a health-related question isn’t a practical solution, I refer them to websites that I trust or that have been certified by an independent, quality rating organization such as the Health on the Net Foundation. This organization’s search engine only retrieves results from websites that have agreed to provide objective, scientifically sound information. One such website—Healthfinder.gov, which is a clearinghouse on a variety of general health topics— links to the latest health headlines, and provides interactive health tools that give personalized advice about screening tests and other preventive health issues. Content on Healthfinder.gov is periodically reviewed by U.S. government health experts to assure its accuracy and consistency with results from the latest scientific studies.
When I want to give patients a handout about the basics of a preventive test or newly diagnosed health condition, I turn toFamilyDoctor.org, a nonprofit website supported by the American Academy of Family Physicians. (Full disclosure: I edit a medical journal that is the source of many of these handouts.) One such handout advises that patients ask themselves 3 questions about every health-related website they visit:
- Where did this information come from?
- How current is this information?
- Who is responsible for the content on this website?
As powerful a tool as the Internet can be in giving people access to health information, it is only a starting point. With few exceptions (for example, management of the common cold), patients should never use online information to self-diagnose or treat a medical problem. However, I believe that patients who visit high-quality health websites are usually better-informed and more capable of making complex choices, such as whether or not to get a screening test for cancer. And in my opinion, that’s a good thing.