E-patients

Disturbing news about doctors:


A web site called MedPage Today finds that many doctors are simply not up-to-date about the latest treatmens and other developments in their fields. As clinicians -- doctors working directly with patients -- they don't have the time to read all of the medical journals they would need to.


I could see this happening pretty easily. I'd compare it to being a teacher. There's lots of great stuff going on in my field, and even as an active researcher, I'm only up-to-date in a few specific slices of my profession. I can't keep up with it all.


Of course, a teacher being behind isn't good, but a doctor being behind is that much worse. I trust Dr. R a lot, but I've mentioned a couple of things to him that he's not aware of fully. I only need to stay up on Follicular NHL; he, as a hematology generalist, needs to know what's up with 30 different kinds of NHL, plus Hodgkin's Lymphoma, plus leukemia, plus whatever other blood diseases he might deal with. That's a lot.


Two ways to deal with this, I think: first, get second opinions, with the second coming from a specialist. For me, that's Dr. C, who works at a research hospital and university. I haven't seen him in almost two years, but I have to think he'd know what I'd be talking about if I mentioned something I'd just read about in a medical journal or website. I feel OK about that set up.


The other way to deal with this: become an e-patient.


Nice article in Scientific American this month on "participatory medicine," a developing approach to medicine that recognizes that many patients are (and should be) active participants in their care. I include myself in this group, of course, which are known as "e-patients," with the "e" being a nod to internet-based businesses from a few years ago (think "e-Harmony"), and an initial for "empowered, equipped, engaged, and enabled." The SA article talks about a new online journal called The Journal of Participatory Medicine that will look at the effectiveness of such active patients.


I think it's great. As the article says, twenty years ago, a patient had two choices: "Swallow the doctor's diagnosis whole, or spend weeks plowing through the primary research literature at a medical library—at the risk of alienating your physician." No more of that; there's too much information out there for patients who are willing to look for it.


Of course, that can be a dangerous thing, too. The support group gets one or two people a week writing, "I have swollen nodes, and the other night I wolk up hot and a little sweaty. Is it lymphoma?" The typical response is a very sympathetic and gentle variation of, "Could be, but it could be a hundred other things -- see your doctor," followed by some questions to be sure to ask. The self-diganosis thing isn't always good, but the turning to an online group is right in the middle of what Participatory Medicine is all about.


Some call the whole thing "Medicine 2.0," which mirrors the participatory nature of all "web 2.o" applications, which is of real interest to me professionally and personally.


Funny how life imitates research....