Download PDF

Although you may not realize it, you have become part a real movement that is becoming the source of growing study and intetest: the e-patient revolution. Though we had all noted that many more people have become enabled, educated, and engaged in their own health care, this mindset has become so pervasive that there is now an e-Patient Scholars Working Group that was supported with a Robert Wood Johnson Foundation Quality Health Care Grant to characterize this growing force. The product is a white paper that you can read here. While it’s comprehensive at over 100 pages, these are double-spaced report pages, not small type book pages, so it’s a relatively quick read over a few hours.

You can read statistics about the well over 100 million people now getting information from the internet and how it’s changing the complexion of health care. The old model of the passive patient who accepts their doctor’s recommendations is giving way to the new, involved patient who is increasingly educated about their disease and discusses options intelligently with their doctor. In fact, there are also a growing number of patients who are actually in control of their care, basically directing their what they want — which can sometimes but not always be a good thing. Particularly for patients with uncommon disease, the patient may come to know more about their disease than their own doctor (especially if there’s a lot of high quality information online), but there’s also the possibility that a patient will know less than they think they do but want to run the process.

The paper focuses primarily on patient-run support and educational groups, including a prolonged discussion of Lung Cancer Online by Karen Parles as one of the early important venture into this arena. In fact, there’s very little discussion of content provided by physicians, such as GRACE. Not only are sites run by patients and caregivers far more common, but the paper describes how some have either a tacit or clear “no docs allowed” policy. I can certainly understand that, since I believe that there should be places where patients can go to vent and get support without having it crashed by doctors. I try to check in here and there on some of the lung cancer sites and intervene if someone asks specifically for medical information, or to correct misinformation, which is the thing I worry most about on websites where people may oversimplify complex medical issues or just not know what they don’t know. Overall, I believe that if physicians could embrace the internet and not feel threatened by patients who can become educated partners, there should be a place for both support and discussion of the cancer experience, as well as distinct places that focus on offering medical information.

There’s little question that the e-patient movement is going to continue to grow as more people turn to “Dr. Google” and the older individuals who accepted a paternalistic medical model of “the doctor always knows best” are far outnumbered by people who want to see the information for themselves. Younger doctors are also increasingly comfortable with becoming partners with their patients rather than presume that they need to act as the omnicient, omnipotent shepherds of a unilateral physi