David B. Resnik, Ph.D.
If you have a medical question, you are likely to find more answers than you want or need in cyberspace. Institutions such as medical schools, medical centers, hospitals, private corporations, and funding organizations operate websites which offer the latest information on HIV, cancer, diabetes, allergies, arthritis, and many other diseases. Many medical journals now publish articles on-line. There are also chat-rooms, listservers, support groups, news groups, and bulletin boards available throughout the internet. Cyberspace promises to improve health care by offering patients and professionals an abundance of information about diagnosis, treatment, prognosis, and research.
This flood of information also poses a grave threat to health care, however. Although websites can inform people, they may also misinform them, and people who are misinformed are more likely to make poor decisions. Misinformed choices may have adverse consequences, such as misdiagnosis, mistreatment, suffering, or death.
Medical misinformation can arise in at least three different ways:
1) people may obtain poor medical information from unreliable (i.e. fraudulent, pseudo-scientific) sources;
2) people may obtain poor information from reliable sources that disseminate errors or mistakes;
3) people may obtain good information from reliable sources but cannot interpret or apply the information correctly because it is too technical or inconclusive.
For example, a recent study of websites that post information about the management of diarrhea in children found that a majority of the articles on the topic provided information that does not conform to the American Academy of Pediatrics' (AAP) guidelines. Eighty six percent of the original documents in the study came from traditional medicine sites, but 14% came from alternative medicine sites. Among the articles from traditional sites, only 20% gave recommendations that conformed to the AAP's guidelines .
Even if a parent or guardian finds a reliable website that provides good information about the management of diarrhea in children, he/she may not be able to understand and apply the information. Can the child be given water or Gatorade if he refuses Pedialyte? Will yogurt help replace bacteria that may be lost? What can trigger diarrhea? When should the child see a pediatrician?
Many health care professionals would like to believe that patients will seek medical help instead of using websites and other information sources for self-diagnosis and self-treatment. However, in the cyberage many people may find it more convenient (and less expensive) to obtain help that is only a few clicks away.
Similar problems can arise if a health care professional seeks to obtain medical information about a subject outside his/her area of expertise. For example, suppose a pediatrician wants to learn more about allergies in children. If he/she uncritically gathers data from websites, he/she may pass on misinformation to patients.
The problem of medical misinformation needs to be addressed if health care professionals and patients are to take full advantage of the internet and world wide web. One possible solution is to attempt to regulate cyberspace in order to prevent medical errors and cyber-quackery. But this solution suffers from at least five difficulties. First, who would be enlisted to peer review/censor cyberspace? It would take a tremendous amount of human resources to keep up with even a single issue, such as diarrhea.
Second, it is sometimes not easy to distinguish outright quackery from controversial medicine. Some of the poor medical misinformation on the web is provided by people who simply advocate treatments or methods that are not scientifically accepted. They may include consumers, medical researchers, health care professionals, and businesses that operate on the fringes of science and medicine. Attempts to prevent cyber-quackery may also stop the free flow of legitimate medical information on the internet and world wide web.
Third, since their inception, the internet and world wide web have been models of free speech. These technologies have been so successful because they enhance the free communication of ideas. Censoring cyberspace, even to promote human health, may be like throwing out the baby with the bath water. Fourth, even if we could stop cyber-quackery, we would still not be able to prevent people from misunderstanding or misapplying legitimate medical information. Fifth, it is not clear if there is currently a sound legal basis for any meaningful regulation of cyberspace. Although the FDA and the FTC have the power to protect consumers from harmful products and deceptive advertisements, their domain is limited to the United States; cyberspace spans the globe. Even when commerce occurs within US borders, the FDA and FTC cannot stop the transmission of all fraudulent medical information. The FDA can prevent manufacturers of vitamin E from putting a label on a bottle saying that the vitamin prevents cancer, and the FTC can stop manufacturers from advertising vitamin E as a cure for cancer, but neither organization has the authority to prevent manufacturers from publishing studies about vitamin E's potential role in cancer prevention.
Education would appear to offer the best solution to the problem of medical misinformation in cyberspace. Health care professionals and patients need to learn more about how to find, understand, and apply medical information. They need to be able to distinguish between good and bad sources, and use the good information they obtain. Health care professionals should warn their patients to review critically all medical information obtained in cyberspace and they should practice what they preach. Professional associations and medical institutions should strive to counteract misinformation in cyberspace with informative, accessible, websites. Two worthy efforts to battle misinformation include Quackwatch (www.quackwatch.com/index.html), which helps people spot fraudulent or misleading medical information disseminated in cyberspace (or elsewhere), and former Surgeon General C. Everett Koop's website (www.DrKoop.com), which rates medical websites for accuracy and truthfulness. The internet and world wide web can play an important role in medical education. Websites can provide patients and health care professionals with fundamental information about medical conditions and human health. Although cyberspace can be a two-edged sword when it comes to medical information, its potential benefits still far outweigh its potential harms.
1. McLung J, Murray R, Heitlinger L. The internet as a source for current patient information. "Pediatrics" 1998; 101 (6): E2. (This article is adapted from an essay that appeared in "Computers and Society," March 1998).