Beginner's Guide, Part 1

Updated 4/13/08 to make the history more accurate.

I'm starting the process of developing a Beginner's Guide to E-Patient, or you might call it a Patient's Guide to Participatory Medicine. I have a headful of ideas and I don't know where to start. So if there's anything you want to ask, you might as well say so, and I'll write about that.

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Meanwhile, here's the first item:

What's with this "e" thing??

The "e" in e-patient originally stood for electronic, email, that sort of thing, as used by patients. It was conceived (to the best of my knowledge) by Dr. Tom Ferguson, founder of the e-Patient Scholars Working Group. It later came to represent empowerment - patients being empowered to be active partners in their care - and has now evolved to "empowered, enabled, equipped, engaged."

The importance (and viability) of empowered patients, actively engaged and participating in their care, is detailed in the e-patients manifesto.

So what does that mean to you?

If you're new to "e" and you're here as a physician, journalist, or researcher, I ask that you change your perspective on healthcare delivery, so the hospital and doctor aren't at the center - make the patient be your starting point, and look outward from there to see what happens around that hub.

Put yourself in the point of view of a patient (your time will come), and read on.

If you're here as a patient, or to support a patient, or as someone who might be a patient someday, this is your starting point.

When I got my cancer diagnosis last year, I had no idea how much of a role I was about to play in my own care - much less why it was important for me to do so.

When you have time, I urge you to read the manifesto (above). Written by doctors and skilled researchers, it's full of information about

• How the healthcare system is different today from what I imagined
• How patients are changing their outcomes by actively participating (with their doctors) in their own care
• How some doctors, but far from all, are "getting it" and making the transition to empowered patients being active participants in their care, and what you can do if yours isn't
  
• Why in today's world of exploding medical information and treatments, the best medical journals are often no longer the most useful resources - online peer communities are.
  
• How patients are using those online peer communities (such as ACOR) to connect with others who share their disease, their concerns, and their personal research findings
  

In several hours that document will change your approach to participating in health care. You'll become empowered (free to act) and you'll see why you want to be actively engaged in your care.

The next step will be to become equipped and enabled. More on that later.

Part 2 is here.

A new quartet to keep an eye on: "On Air"

At last weekend's local barbershop quartet competition, a new quartet popped a lot of eyes open. Their first song contains, about 45 seconds in, one of the best renderings I've ever heard of a "bangin'" barbershop chord, performed at a level that usually requires an international-top-ten quartet. Three of these four are members of my chorus.


From left to right: Jon Green (tenor), Jayson McCarter (lead), Kurt "Boot!" Boutin (megabass), George "the man" Feinberg on baritone.

What's particularly astounding is that these guys have been singing together for less than two months. Imagine what it takes to be so precise in beginning and ending phrases so completely in synch, not to mention with the pitches matched so well that they produce the "expanded sound" that's the hallmark of barbershop harmony.

What a pleasure to be around at the first coming-out of a new quartet like this.

E-patients: the system is valuable, and so are you

Yesterday my wife sent me a very sad story titled Four Get Cancer from Teen's Donated Organs. This morning I wrote a heartfelt post about it on the e-patients blog. If you're trying to understand what the role of an e-patient is, in today's healthcare world, I urge you to read it.

The post is not about the tragedy itself; it's about one of the pivotal points of learning in becoming an e-patient.

One of the central barriers to "participatory medicine," as we're calling it recently, is that some doctors (and patients) don't yet understand that there's far less risk in patients self-educating on the Internet than was once feared. The e-patient white paper (available on that blog site) documents this in some detail. My post looks at this incident as a painful example of that point.

It's really, really important that you understand that lesson and explain it to others. It's the first step toward becoming a really effective partner in the care you're seeking, whether it's for yourself or a loved one.

Randy Pausch is still kickin'

I last posted about Randy in mid-February. At that time he'd beaten the odds on expected survival. Several weeks later he testified before a Congressional subcommittee.

Please go have a look at his web site, which has a link to his 8 minutes of testimony. He's a really persuasive speaker.

There's also a promo for an ABC News show next Weds, 4/9, about his famous Last Lecture. I personally can't stand Diane Sawyer's overly emotional approach to everything, but I'll be taping and watching the show. (Not surprisingly, the show is timed to coincide with the release of the book about his lecture, one day earlier.)

His daily update journal, also linked from his site, details that his condition is worsening measurably, and in his testimony his voice now trembles when he talks about his family. Yet he remains so committed to being fully alive in every way that he can - that's what I love about him. In that way, he's my brother, in more than just the universal sense.