A family recently came into my office and dumped a foot-high stack of papers on my desk. These, they explained, were pages they had printed from the World Wide Web that provided information on their child’s rare genetic disease. What did I, a doctor and expert in the field, make of the reports? That night I spent eight hours reading through the pile, trying to separate quackery from relevant information. During that long evening, I also realized the extent of the difficulties ever more people face when they are trying to make important decisions about health care options.
Over the last few years the Internet has started to create an amazing challenge for medical providers. When people receive an unusual diagnosis, they frequently go to the Web to obtain all the information they can find. Every doctor I know has at least one anecdote about patients coming in with mounds of Web pages.
The problem is that many patients and their families often don’t have a way to discriminate between the substance and junk served up on Web pages and chat lines. And as Robert W. Cooke, a science writer at Newsday in Long Island, has pointed out, some of the junk may be particularly appealing because it is written much more clearly than scientific papers. So the idea that what is actually hokum might help can seem especially attractive when controlled, peer-reviewed studies do not offer much hope for a serious disease.
Sometimes decisions based on poor information gleaned from the Web prove devastating. Diana W. Bianchi, chief of genetics and perinatal genetics at New England Medical Center in Boston, has spoken of several couples who decided to abort a pregnancy based on what they read on the Web about a problem such as mental retardation that they thought their child could end up with. Yet the condition their doctors actually identified was only rarely associated with a functional difficulty. She reports that these couples were so firm in their decisions that they did not want to listen to or even consult a genetic counselor who could explain the true risks involved.
Fortunately, some members of the public appreciate the value of scientific papers over other kinds of information. Occasionally patients with rare conditions arrive at a clinic having correctly diagnosed themselves based on their Web research. John A. Phillips III, a professor of pediatrics and biochemistry at Vanderbilt University School of Medicine in Nashville, has encountered families who recognized a disease their physicians did not.
Still, most people who use the Web to obtain medical information do not know if what they are reading is sensible. This means that their clinicians can face a strange kind of liability. Many doctors, with their days already stretched by the changes in the health care system, simply can’t read everything given to them by their patients. But if we don’t do so, our patients may end up with misconceptions and/or lose their trust in traditional medicine based on scientific studies.
Perhaps the most useful way to help patients and their families obtain a handle on the legitimacy of what they’re reading on the Web is to establish a publicly acceptable method of grading information (sort of a “V” chip reflecting authenticity). To best accomplish this, a group concerned with patient welfare could bring together consumers, Internet providers, the medical establishment, support organizations interested in particular disorders, and the public to organize such a system. The group could, say, recommend measures such as dating information so readers can recognize if it has undergone appropriate review and revision.