Physicians Urged to Collaborate With Patients Who Use Internet for Health..

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Physicians Urged to Collaborate With Patients Who Use Internet for Health

Information

Tokarski

Dec. 12, 2002 (Orlando, Florida) ‹ 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, 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 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 D. Vogin, MD