Dec. 12, 2002
Instead of shunning patients who turn to the Internet to get information about their health, physicians should learn to collaborate with them to improve the quality of their care and better disseminate new knowledge about illnesses and treatments, experts said Tuesday at the 14th annual National Forum on Quality Improvement in Health Care.
Internet-empowered patients, or "e-patients" have a "completely different" view than physicians of the value of the Internet for seeking credible information about their health, said Tom Ferguson, MD, a senior research fellow of online health for the Pew Internet and American Life Project.
According to a 2001 Pew Research study titled "Online Health Care Revolution," nearly all patients (92%) said they found the information they were looking for online, 88% said the information they found online improved the way they took care of their health, and 81% said they learned something new about their health as a result of their research.
The study also found a sharp difference in the amount of time online that the estimated 6 million e-patients spend each day, depending on whether they are healthy, newly diagnosed with a disease, or caring for a chronic condition. Healthy patients, who make up 60% of the patient population, account for only 5% to 10% of the time spent looking for health information online, compared with newly diagnosed patients, who make up only 10% of the patient population but account for between 60% and 70% of time spent online, Dr. Ferguson said. "The time newly diagnosed patients spend is quite astonishing," he said. E-patients already diagnosed with an illness make up the remaining 30%, and account for between 25% to 35% of the time spent looking for online health information.
To illustrate the powerful role that the Internet has played in the lives of newly diagnosed patients, Dr. Ferguson described the creation of a Web site (www.lungcanceronline.org) by a patient who had been diagnosed with lung cancer in 1998 at the age of 38. The patient, Karen Parles, was told that she had no therapeutic options. Unwilling to accept that prognosis, she enrolled in a clinical trial, from which she received a complete cure, according to Dr. Ferguson. The experience prompted her to create the Web site, which is regarded as the "best site for lung cancer" and is used by many physicians as a medical resource, he said.
Social networks have quickly formed around individuals coping with the same illness, noted John Lester, director of information systems at Massachusetts General Hospital's neurology service. He described a network of patients with multiple sclerosis (MS) who convened online on a weekly basis as they injected interferon beta-1a, which can help reduce the risk of disability that accompanies the disease. "These social networks couldn't exist without the Internet," Mr. Lester said.
He urged physicians not to think of email communications with patients as simply one more form of communication that will drain time without any benefit. Email should be triaged, and guidelines and expectations should be established between the doctor and the patient. "Think of instant messages, and threaded discussions," not just the back-and-forth of which email communication often consists.
Dr. Ferguson and Mr. Lester urged attendees to capitalize on patients' interest in taking care of their health and to direct them to sites, where appropriate, formed by patients themselves. Despite some concerns to the contrary, "patients don't want to be doctors," said Mr. Lester. "They want to be better patients."
Reviewed by Gary D. Vogin, MD
© 2002 Medscape