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  Key Concepts in Online Health:
From Patients to End-Users

Some of my physician friends still tremble in their boots when patients bring in printouts from the Internet. If they refuse to read them, their patients may take offense. But if they attempt to review and discuss them, they may precipitate long, inconclusive discussions. And since many e-patients bring in information which their physicians know nothing about, such discussions can sometimes be embarrassing. As a result, some physicians have gone so far as to warn their patients, "Whatever you do, don't go on the Internet."

Some recent studies would appear to confirm the wisdom of such advice: A recent literature review by the indefatigable Gunther Eysenbach turned up 100 studies which attempted to rate the accuracy and/or completeness of health information on the World Wide Web. Accuracy-and-or-completeness ratings ranged from a low of roughly 15 percent to a high of about 85 percent. Some of my colleagues have understandably concluded that patients who use the Net may do more harm than good.

Our recent surveys at the Pew Internet and American Life Project offer a strikingly different perspective: Of US adults who had accessed online health information, fully 92 percent said that the last time they went online, they were able to find the information they were looking for. 81 percent said they learned something new. 88 percent said the information they found improved the way they took care of their health. Of those who found health information online, 94 percent said that it was either "very easy" or "somewhat easy" to do so. And of the 37 percent who discussed the results of their searches with a health professional, only a tiny minority said that their health professional disagreed with the information they found online.

In explaining this notable difference of opinion between providers and patients, we must remember that it is only systems without their own inherent intelligence that require perfect and complete input to operate effectively. Suppose that we were to subject a dozen randomly-chosen print sources-textbooks, magazine articles, newspaper stories, patient handouts, etc.-to a similar evaluation, and found a similar level of variability in quality and completeness. Would we be justified in concluding that healthcare information in printed form is so undependable and unreliable that we should warn our patients against it? I think not. And before we conclude that the information on the Net is hoplessly inadequate, incomplete, and generally scary, we might try comparing it with what the typical physician tells the typical patient in the typical ten- or twelve-minute office visit. Medical services provided online shouldn't be held to a higher standard than similar services provided in person.

Online patients do agree with their physicians on one point-that much of what passes for online health information is not to be trusted. Eighty-two percent of those with Internet access say that they're concerned about getting online health information from an unreliable source. Where professionals and patients differ is in their views of e-patients' abilities to make responsible decisions and to tell the good from the bad.

The e-patients we've studied have proved themselves so unexpectedly capable in this regard that we have sometimes been forced to ask ourselves whether we can, in good conscience, continue to use the term "patient" in describing them, for they are no longer behaving like "patients" in the traditional sense, i.e., a person under a physician's care, an invalid, a sufferer or victim, someone who bears pain and misfortune with fortitude and calm, etc. We are beginning to substitute the term "medical end-user" whenever this seems appropriate.

The medical end-users we study do much more than just visit a single Web site and make snap decisions based on what they find. They typically use a search engine to find and review a number of different sites that target their specific concerns. And they frequently find or form sophisticated online (and offline) networks which provide support and advice and help them deal with the task of interpreting complex medical information:

  • It is typically the most Net-savvy person in the immediate kinship group who does most of the searching. Forty-three percent of online health searchers said that the last time they went online they were searching for materials related to their own health concerns-but an astounding 54 percent were searching on behalf of someone else, most frequently a child, a parent, another relative, or a friend.

  • When a new illness is diagnosed in a wired family, patients and/or family caretakers begin reaching out electronically to keep friends and family informed. The recipients typically respond with ongoing messages of support and offers of help, medical information, and advice. Many of the interchanges within these private patient-centered networks serve to help end-users sort the good from the bad.

  • When newly-diagnosed end-users go online to research their condition, they frequently seek and receive the help of online support communities as well as online patient-helpers-knowledgeable and experienced e-patients with the same condition who have set up Web sites to help and guide others with similar health concerns.
Experienced online end-users can and frequently do find and communicate with online health professionals. They can also check up on their own doctors, get informal online second opinions, and find referrals to the best treatment centers for their conditions.

These "person-to-person" interactions provide e-patients with a valuable source of quality control. As one online self-helper recently commented: "Doc, out here on the Internet we patients have our own system of peer review."

We believe that the 21st Century will be the Age of the Net-empowered medical end-user and that the patient-driven online support networks of today will evolve into even more robust and capable medical guidance systems which will allow end-users to direct and control an ever-growing portion of their own medical care. Health professionals who continue to believe that their patients are inherently incapable of navigating the plentiful health resources of the Internet will find their Net-savvy patients leaving them for other doctors. By contrast, those wise and caring healers who realize that we may have just as much to learn from our patients as they from us should do very well indeed.


(1) Wilson, Steven M., "Impact of the Internet on Primary Care Staff in Glasgow," Journal of Medical Internet Research, Nov 19, Vol. 1, No. 2 (e7), October-December 1999. http://www.jmir.org/1999/2/e7/index.htm. In this survey of 160 General Practitioners, Wilson found that "Surprisingly, 65% of the information [from the Internet] presented [to doctors in the clinic] by these patients was new to [the] GPs."

(2) Eysenbach, Gunther, "CyberHealthcare and the Physician-Patient Relationship," American Medical Informatics Association Annual Symposium, Washington DC, Nov 7, 2001. Dr. Eysenbach's systematic review of the literature will be reported in an upcoming paper in the Journal of the American Medical Association (currently in press).

(3) Fox, Susannah, and Lee Rainie, The Online Health Revolution: How the Web Helps Americans Take Better Care of Themselves, The Pew Internet & American Life Project, Washington DC, Nov. 26, 2000, www.pewinternet.org. The report of the results of our most recent survey, conducted in August 2001, are currently in press and will be published at the web site above.

(4) Ferguson, Tom, "Online patient-helpers and physicians working together: a new partnership for high quality health care," British Medical Journal, 2000; 321: 1129-1132.

(5) For some examples of sites where e-patients can consult physicians online, see www.drgreene.com, www.drweil.com, and www.americasdoctor.com.

Published in The Ferguson Report, Number 8, January 2002


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