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.
This past fall the Boston Globe reported that several organizations have already started to develop variations along these lines. For example, officials with the American Medical Association have published “core standards” consumers can use to consider the relative value of online health information, and the Health on the Net Foundation in Geneva has created a logo for medical Web sites that include “principles” set forth by that organization. This coming spring the Health Information Technology Institute (HITI)-which is associated with Mitretek, a nonprofit environmental and engineering-technology organization of McLean, Va.-plans to publicly offer medical-information “quality” criteria. HITI has spent the past year organizing the group developing the criteria so that it has the kinds of constituents I’m suggesting; the group’s members range from doctors to consumer representatives.
Physicians and researchers need to recognize that since the public now has easy access to their literature, clarity is a virtue. Moreover, papers that lay readers can understand may help provide something of a bridge to those people who mistrust doctors because we want treatments to undergo proper scientific review and insist on or at least try to provide evidence-based medicine. Doctors would also do well to make the effort to refer individuals and families with serious or rare conditions to appropriate lay support groups that usually offer the benefits of collective experience and good sources of information-which can include Web sites.
The information revolution has compounded the complexity of doctor-patient relationships. The Internet has essentially enabled patients and families to easily seek second opinions, and third ones, and more. Given two provisos, this can produce benefits for both concerned patients and busy medical practitioners, who presumably want the best outcomes for their patients. Laypeople must have the means to understand and evaluate the strength and validity of the information they obtain. At the same time, they should not expect their doctors to have the luxury of time or economy of practice to “surf” with them.