Untangling the Web..Patients, Doctors/the Internet | Arthritis Information

Share
 

Medicine has built on a long history of innovation, from the stethoscope and roentgenogram to magnetic resonance imaging and robotics. Doctors have embraced each new technology to advance patient care. But nothing has changed clinical practice more fundamentally than one recent innovation: the Internet. Its profound effects derive from the fact that while previous technologies have been fully under doctors' control, the Internet is equally in the hands of patients. Such access is redefining the roles of physician and patient.

Information traditionally flowed from doctor to patient; the physician described the genesis and course of a disease and the options available for treating it. Often, pamphlets were provided to reinforce the doctor's explanation and advice. The patient might then receive additional input from family and friends, usually in the form of anecdotes about people who faced similar clinical situations.

The Internet has upended that scenario. The Web offers virtually unlimited amounts of information. Everyone can now visit many of the sites that inform and educate doctors. Popular search engines such as Google and Yahoo provide portals to primary data published in scholarly journals as well as critical analyses of these studies, slide presentations from grand rounds, videos of surgical procedures, and guidelines from professional societies. The voices that patients hear have multiplied wildly as chat rooms and blogs filled with testimonials have proliferated. Patients frequently encounter conflicting advice and opinions.

To be sure, exposure to a range of views can be helpful. "Thank God for the Internet," a friend remarked after receiving a diagnosis of prostate cancer. He had been given the biopsy results by a urologist, who had offered to schedule a prostatectomy within 10 days. Concerned about incontinence and impotence, our friend searched the Web for outcome data on other treatment options. He made appointments with a radiation therapist, who advised him on the risks and benefits of treatment using implanted seeds as opposed to external-beam radiation, and a medical oncologist, who discussed the pros and cons of "watchful waiting." "I'm still thinking about it," our friend said. "And I'm reading more on the Internet."

But many patients have not fared so well. One woman with recently diagnosed lupus told us, "I really don't want to read what's on the Internet, but I can't help myself." Her condition is currently stable, but she finds herself focusing on the worst possible complications of the disease, such as cerebral vasculitis. Although her doctor gave her detailed information, she cannot resist going on the Web to seek out new data and patients' stories. "It's hard to make out what all of this means for my case," she said. "Half the time, I just end up scaring myself."

Other patients whose diseases have no ready cure are drawn to chat rooms and Web sites that may make unsubstantiated claims — assertions that macrobiotic diets cure aggressive lymphoma, that AIDS can be treated with hyperbaric oxygen, that milk thistle remedies chronic hepatitis, and myriad other fallacious claims. Falsehoods are easily and rapidly propagated on the Internet: once you land on a site that asserts a false rumor as truth, hyperlinks direct you to further sites that reinforce the falsehood.1 Material is perceived as factual merely because it is on a computer screen. We sometimes find ourselves in the uncomfortable position of trying to dissuade desperate and vulnerable patients from believing false testimonials. Doctors may be perceived as closed-minded, dismissive, or ignorant of "novel therapies" when they challenge such Internet rumors.

Patients also consult the Internet in search of self-diagnosis. Sometimes, doing so leads them to seek medical attention rapidly and to suggest what turns out to be a correct diagnosis. But the Web is perilous for anyone prone to hypochondria. The differential diagnosis for backache, for example, led one of our neighbors to fret that he had an abdominal aortic aneurysm. After a week of self-palpation, he mustered the courage to call his doctor. With a normal exam and repeated reassurance, the backache resolved.

Hospitals may inadvertently contribute to such Web-inspired worry. Many medical centers have secure Web portals that allow patients to view their laboratory, radiology, and pathology results remotely. This technology is efficient, averts the need for multiple phone calls and the mailing of information, and is welcomed by many patients. The benefits, though, must be weighed against the potential negative effects of receiving clinical data without context. Patients and families may be confused by results and worried that minor abnormalities might portend serious consequences. One man saw a report in which his neutrophil count of 78% was highlighted in red; the upper limit of normal was 70%. He took this fluctuation as an indication of possible leukemia and passed a sleepless night before he could contact his physician and learn that the increase was not significant.

In addition to information about their conditions, patients increasingly seek information about their doctors online. Yet search results for doctors vary depending on how the name is entered: "Dr." followed by a name gives a plethora of rating sites, whereas a search for the same name with "M.D." at the end yields scholarly publications as well. Such variation can skew the decision of a patient trying to choose a physician to consult. Furthermore, the information obtained in Web searches of physicians is not always accurate (e.g., one of us was listed on one site as a podiatrist rather than an endocrinologist).

As physicians, we, too, use the Internet daily. Doctors now routinely consult the Web in search of diagnoses. In 2006, two Australian specialists tested the diagnostic accuracy of Google searches by entering symptoms and signs from 26 published case records.2 The search revealed the correct diagnosis in 15 cases. Internet searching was more effective for conditions with unique symptoms and signs; complex diseases with nonspecific symptoms or common maladies with rare presentations were less likely to be diagnosed this way. The specialists partially attributed their high success rate to their expert knowledge, which enabled them to choose the correct diagnosis when presented with a list of possibilities.

The Internet also provides physicians with immediate access to current information, including primary source data. Journal articles can be obtained within seconds, and experts' evidence-based analyses are readily available on the sites of professional societies and in compendiums such as UpToDate and Zynx. Like many physicians, we have been asked by patients about novel therapies of which we were unaware and have resorted to searching the Internet for details. Primary care physicians now have easy access to many guidelines whose reach was previously limited to specialists; such access may ultimately blur the line between generalists and specialists and could reduce the volume of referrals to some types of specialists.

Beyond providing broader, speedier access to information, the Web is profoundly changing communication between doctor and patient. Many patients feel free to e-mail not only their own doctors but also specialists around the world. Many doctors also take the initiative and inform their patients of test results by e-mail — an efficient practice that will probably be favored under health care reform. But exchanging e-mail with patients can become time-consuming and burdensome, and there is generally no reimbursement for it. Moreover, sending e-mail is quite different from speaking with a patient face to face, and doctors must consider carefully what they say and how they say it. It's impossible to judge the effect on patients of information transmitted through cyberspace: we can't observe grimaces, tears, or looks of uncertainty. And written dialogue is quite different from spoken conversation: replies may be delayed, phrases may be more stilted, tone of voice is absent. We should pay close attention to any unintentional fraying of the physician–patient bond.

As physicians, we are struggling to figure out how best to use this technology in the interests of our patients and ourselves. Although the Internet is reshaping the content of the conversation between doctor and patient, we believe the core relationship should not change. A relative recently asked us, "What can you possibly learn from your doctor that is not available on the Internet?" We suspect we'll hear such radical sentiments increasingly in the future. Knowledge is said to be power, and some of the past imbalance of power between patient and doctor may be equalized. But information and knowledge do not equal wisdom, and it is too easy for nonexperts to take at face value statements made confidently by voices of authority. Physicians are in the best position to weigh information and advise patients, drawing on their understanding of available evidence as well as their training and experience. If anything, the wealth of information on the Internet will make such expertise and experience more essential. The doctor, in our view, will never be optional.

http://content.nejm.org/cgi/content/full/362/12/1063?query=TOC

Copyright ArthritisInsight.com