One of the central tenets of the “e-patient” movement that is, I believe, revolutionizing how health care is practiced is the concept that physicians shouldn’t be the gatekeepers of the lab tests, scan results, and most other critically important information about a patient’s health. This has led my friend e-Patient Dave to focus on the key refrain “Gimme My Damn Data” as a critically important theme for empowering patients. He’s just leading the charge here, as the US Department of Health and Human Services in collaboration with the Centerse for Medicare and Medicaid Services, the Centers for Disease Control and Prevention, and the Office of Civil Rights have proposed a new rule that would allow patients to access their own test results directly from the lab by request (which could be in paper or electronic). Of course, more and more patients are coming online with their questions about lab results, scan findings, and pathology reports, and we struggle here with how much information we can feasibly provide and where we’re overstepping the bounds of what should be handled by the medical team directly involved?
Last year I wrote a summary about e-patients, a population that people here should be aware of because they’re part of it, whether they know it or not. E-patients are the new breed of patients, and the caregivers who are part of their “team”, who avail themselves of information and support online to become empowered, educated, and enabled to become direct participants in their own care. Oncologists, like physicians throughout all aspects of medicine, are gradually changing their practice patterns as medicine’s old paternalistic model (doctor knows best, “whatever you say, doc“) gives way to the doctor/patient relationship being more of a partnership in which the physician’s role is to present options with their associated anticipated risks & benefits rather than simply telling a patient what to do.
I’ve been asked to write a summary for a physician magazine about the e-patient movement and to describe the ways, good and bad, that the online world is changing how patients interact with their oncologists. I’ve also just recently been asked to speak at the FDA in a couple of months about a similar topic. And though I have my own ideas of the sketch of what I’m planning to write, I wanted to give folks here an opportunity to note things I may be missing, and in general how you feel about “oncology 2.0″, in which the world of online information is changing the practice of oncology.
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.
