In the past few days, with my discovery on 1/23 of the e-Patient Scholars Working Group, my entire outlook on life has changed - so much so that I'm changing the title of this blog from "Patient Dave" to "e-Patient Dave."
That's because I've found my purpose for this blog. And that in turn is because my experience over the past year is a ridiculously close match for the principles and practices recommended by the group. So I think I've found the answer to a question I've asked in recent months: "What am I going to do, what am I going to create in the world, out of my experiences of the past year?"
I'd heard about this "movement" (my term, not theirs) earlier in the month from Dr. Danny Sands, my primary physician, a member of the group. I'll be saying more about the subject in coming posts, but I'm going to start with a few words and a few links. (These will be duplicates, for readers of my CaringBridge journal.)
Here's what I found last Wednesday when I googled the term. First I found the eDoc America blog, which said:
'ePatients are those that use e mail and the internet to become empowered to manage their own health and become partners with their providers. From saving lives to saving dollars, this blog both entertains and instructs in ways to use the internet for better health care. Approach with caution—this may radically change your views about your approach to the health care system!'(The page with that text went away when the blog moved in January - but it'll live forever here :-).)
Here are a few links I've found since then:
- The e-patients white paper - a manifesto, brilliantly written, with compelling true stories that will bend your outlook on who's responsible for what in health care. 126 pages but it reads fast - someone I know read it Friday afternoon, and called it "thrilling." (The paper was a research project supported by a Robert Wood Johnson Foundation Quality Health Care Grant.)
- Their blog and its RSS feed
- A guest appearance (last week!) by group member Dr. Alan Greene on NYTimes.com. (He's founder, with wife Cheryl, of www.DrGreene.com, one of the first e-patient-centric pediatric sites.)
- An interview with group members Joe and Terry Graedon, founders of PeoplesPharmacy.com and hosts of a Public Radio talk show. (Check out their classic e-patient editorial, just last Monday: "Don't be a good patient." Huzzah!) (And no, it doesn't say "Doctors are jerks." Just read it.)
- ACOR.org, the free collection of online cancer resources founded by group member Gilles Frydman, including the [KIDNEY-ONC] kidney cancer email group that played such a pivotal role in my case last year.
- A landmark 2001 article in Wired about people taking command of (and responsibility for) their care. The article won the American Society of Journalists and Authors 2002 Writing Award for Outstanding Article of the Year: Reporting on a Significant Topic. Note - that's not "significant medical topic" or "significant e-topic," it's any topic.
And suffice it to say, it's been a busy few days for me. As I've said to several friends, "It's as if I've discovered a parallel universe where everyone speaks a language I thought nobody else spoke."
I can't believe I went through last year without knowing about this group. Well, I do now.