The explosion of medical information readily available on the Internet has already changed doctors’ conversations with patients. Ten years ago, patients might have come to a clinic visit with a newspaper or magazine article, but it would have been unimaginable to encounter patients armed with the large volume of information currently available on the Web. Patients can now download huge amounts of material from web sites ranging from highly reputable sources to suspicious commercial sites.
The last 15 years have seen patient autonomy become what some have called the “first principle” of medical ethics. The Internet has fueled this trend by allowing patients unprecedented access to information. Unfortunately, it has also provided a forum for some to capitalize on a patient’s desire to be informed.
Several recent patient encounters in our outpatient clinic illustrate patients’ use of the Internet:
1. A 55-year-old woman from out of state with acute myelogenous leukemia in third relapse came to our clinic on the advice of her primary oncologist to discuss transplantation This option was presented to her as a last hope for cure, and she and her family had downloaded 25 pages of material from the Web using the key word “transplant.” The documents were highlighted in pink marker with stars next to the issues about which the patient had questions.
It became rapidly clear to us that this woman with multiple comorbidities and other confounding problems was in no way a candidate for the allogeneic transplant that her doctor had discussed with her. Moreover, nearly all of the material she had read concerned autologous transplants. Devastated by this realization, she had a difficult time accepting our explanations of the highlighted items in the document, and she left her clinic visit disappointed and frustrated at having “wasted her time” traveling all the way to Chicago.
2. A 59-year-old man with metastatic pancreatic cancer came to the clinic for a consultation. At the outset of our encounter, he said that he had come in order to get the drug that “choked off the blood supply to the tumors.” He showed us a dozen pages of material from various Internet sources touting the advantages of angiogenesis inhibitors over conventional forms of therapy. He also expressed frustration that his own oncologist had not already offered what to him and his family clearly appeared to be a superior form of treatment.
Several sources mentioned the University of Chicago as a center specializing in new therapies and drug development. A wave of disappointment swept over the patient and his family when we informed them that the compounds that they had read about were not yet available.
3. A 51-year-old man with a prostate-specific antigen (PSA) level of 40 ng/mL and a Gleason 7 prostate cancer diagnosed by needle biopsy came to our clinic to discuss treatment options. He already had sought opinions from two surgeons, two medical oncologists, and one radiation oncologist. His briefcase was overflowing with material downloaded from dozens of Internet sources, and he asked the nurse to give us a typed list of 45 questions to peruse before our encounter. His questions covered standard and investigational approaches, “alternative” therapies, vitamin treatments, nutritional supplements—all topics he had researched in detail using the Internet, the mail, and his previous consultations. He had no objective evidence of extraprostatic cancer and was having great difficulty choosing among radiation therapy with hormonal therapy, hormonal therapy alone, or surgery.
Helping Patients Separate the Wheat from the Chaff
These examples highlight the pitfalls and perils patients encounter as they navigate the mountains of material now readily available to them on-line. They also illustrate one of the new roles we must take on as their doctors: helping patients to separate the wheat from the chaff on the Internet.
The article by Pergament and colleagues clarifies our understanding of some of the situations described above and exaggerates the importance of others. One principle that is clearly active in these discussions is that printed material automatically takes on an aura of truth. As the authors correctly point out, “Anyone can create and maintain a web site.” Web sites that attempt to peddle various forms of quackery appear side by side with rigorously reviewed cancer resource web sites, such as the site developed by the National Cancer Institute.
A more subtle example of this effect is at work in the first example above. Although this patient obtained valid information from the Web, due to a lack of background and sophistication, she was unable to conclude that the information was not applicable to her.
Already, a sort of editing process of web sites is being created for those who are interested in following it. The series of articles in the Journal of the American Medical Association entitled NetSight, for example, seeks to review and validate those web sites that provide reliable information for patients, physicians, and researchers. A May 1997 article reviews reliable sources for cancer information on the Internet and nicely summarizes the most comprehensive cancer sites.
Connecting Patients and Physicians
The authors also highlight a key function that the Internet will increasingly perform in the future: connecting patients and physicians. Nowhere will this be more important than in the development of clinical trials.
Internet sources will provide cancer patients with unprecedented access to information about clinical trials and will eventually be used by professional organizations as a means of enhancing the number of patients interested in participating in a trial. The major cancer and cancer research organizations will need to take the lead in this endeavor, and the authors’ plea for proactivity on the part of physicians is good advice.
Internet and Physicians’ Authority
We would take issue, however, with the authors’ assertion that the Internet is contributing to the erosion of physicians’ authority. It is clear, at least from the examples above and from the vast majority of our anecdotal experience, that patients bring this information to their doctors specifically to enlist their help in interpreting it. In the second scenario described above, the clear disappointment of the patient and his family at learning that they had been misled by information on the Internet speaks to their trust of our interpretation of that data. In the third example, the patient with prostate cancer clearly was paralyzed by information overload—a situation that inevitably will arise more frequently as the Internet continues to expand—and looked to multiple physicians to help him sort through it all.
In the end, we believe that the doctor-patient relationship will not be fundamentally altered by the Internet. Instead, doctors will simply expand the role that they have always played: helping patients interpret often complex and bewildering situations with a commitment to the patient’s good. The word “doctor,” after all, derives from the Latin word “docere,” which means “to teach.”
1. Sikorski R, Peters R: Oncology ASAP: Where to find reliable cancer information on the Internet. JAMA 277(18):1431-1432, 1997.