"E-Patients" Challenge Subordinate Role in Medical Care System

Cathy Tokarski

May 21, 2004

May 21, 2004 — Even though half of adults in the U.S. say they have looked for health information on the Internet, clinicians continue to underestimate the benefits and overstate the risks of online health resources, a new study finds.

A fundamental reason why physicians do not encourage their patients to consult an online resource about an illness or medical condition is the subordinate role the health system continues to assign to responsible, motivated patients, according to study author Tom Ferguson, MD, senior research fellow at the Pew Internet and American Life Project. Contrary to what most physicians have been taught, "the universe doesn't rotate around the physician, but the patient," Dr. Ferguson told Medscape in an interview. "The whole mode of thinking that we've all been trained in [as physicians] does not admit room for that."

But "e-patients," or those who seek online guidance or information about their condition, as well as friends and family members who conduct research on their behalf, are slowly but steadily changing the standards by which healthcare access and quality are judged, according to Dr. Ferguson. His editorial on the impact of e-patients appears in the May 15 issue of the British Medical Journal. The issue is devoted to e-health, and it envisions a healthcare system that uses communication and information technologies to enhance patient care.

In addition to e-patients' pursuit of online information, which they describe as often more complete than what they receive from clinicians, e-patients also use online support groups for "emotional support, guidance, health information, and medical referrals for nearly all medical conditions — around the world, 24 hours a day and seven days a week, for free," Dr. Ferguson writes. "For the sickest patients and those with rare diseases, online support groups can sometimes be more important resources than physicians for many aspects of medical care."

One support group for patients with gastrointestinal tumors, called the Life Raft Group (www.liferaftgroup.org), conducts patient-initiated clinical research and has a science team that includes an oncologist, a microbiologist, and a virologist, all of whom are either patients or family members, according to the editorial.

E-patients are beginning to take note of the "net friendliness" of clinicians and healthcare organizations as an important aspect of healthcare quality, the editorial notes. "Net friendly clinicians support their e-patients' new abilities, encourage them to share the results of their online research, and communicate with them by email."

Supporting patients' quest to learn as much as they can about their health condition should be a guiding principle, not the exception, to quality care, said Dr. Ferguson. "We have a professional construct of what constitutes healthcare quality that often does not gibe — and is often diametrically opposed — to what patients think is healthcare quality," he said.

Health researchers must begin to appreciate the transforming effect that e-patients are beginning to have on medical care and to work more aggressively to build that awareness, the editorial advises. "A number of insightful studies of the emerging culture of e-patients have been published, mostly in the social science literature. But they are rarely cited in mainstream medical journals, and their conclusions are unknown to most clinicians," Dr. Ferguson writes.

Finally, according to the editorial, the entire health system is in need of a "major system upgrade in our thinking" in order to recognize the legitimacy of e-patients, and to involve them in the management of their healthcare and in collaborations between patients and healthcare professionals.

Clinicians could take the first step toward this goal by "paying attention to their own patients and their use of the Internet,"Dr. Ferguson said. Ask them about what they have learned in their online research and what kind of experiences they have had or heard about from friends or family members, he said. "They may know things that are helpful in treating your [other] patients. The level of knowledge may be narrow, but it is deep and "quite amazing," he said.

BMJ. 2004;328:1148-1149

Reviewed by Gary D. Vogin, MD

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