Sunday, April 13, 2008

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.


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.

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