(btw, not to be too “e” about it or anything, but I’m blogging while sitting in my oncologist’s office waiting to be seen next. Don’t we love hospitals that have free wireless?)

The whole book is 240 pages and I found it quite readable (however, I studied anthropology so I’m into ethnography). Like Tom’s e-patients book, it was completed after Forsythe’s death by a group of friends and colleagues.

Which is to say, is this a tome that requires emotional commitment?

Chapter 7, “New Bottles, Old Wine: Hidden Cultural Assumptions in a Computerized Explanation System for Migraine Sufferers,” is particularly salient to this discussion. Forsythe writes, “Based on the fieldwork, I compiled a list of about 200 queries to which migraine sufferers wanted to know the answers. The restriction of the system’s explanatory frame to the patient summary made it impossible for the system to address most of these questions.”

One of the top questions asked by patients but not answered by the computer: Are migraines going to kill me? Experts might dismiss it as a silly question, but it’s not silly to someone experiencing a debilitating migraine.

Aw, gee, G. :-) You’re stealin’ my ideas. Just tonight I was telling friends that this is what I want to work on next. Well, sorta. It wasn’t quite that – my specific interest is on an overall context education for the newly diagnosed, and “how to become an e-patient” would be a vital part of it.

Back in October I wrote to the Kidney Cancer Association, a very good group, which had just put on a conference that was supposedly patient-facing but which despite the best intentions was basically a patient-facing presentation of doctor-oriented information. I emphasize that it was with the best of intentions but it missed the mark. I proposed a second, non-medical track, and volunteered to help develop content. It’s all things I wish I’d learned right at the outset. Here’s the outline I proposed.

• Cancer is no longer a death sentence.
• The importance of your attitude and feelings
• Understanding the statistics you read
• Creating a support community of your family and friends
• Taking care of the caregiver
• Online resources—not just medical information, but social resources too
• Advocating for your own care

I fleshed it out later but haven’t taken any action on it yet. Obviously now that I know about the e-patient principles, they’d play a big role in it – but I think it’ll have much more power when couched in a larger empowering (and practically enabling) context.

We already know what are all the various types of internet users and of online community users. Creating scenarios of health empowerment for these various categories should be absolutely doable.

That’s a great, great question. In my day job I’ve been digging into “what is Web 2.0,” and yours is the next big question that emerges in the health arena, but it was just over my horizon and I hadn’t seen it yet.

For one thing, I’m getting my buns in gear by publishing my story (thanks Gilles) on ACOR, to give people a case history of a very different approach to cancer, incorporating both e-patient methodologies and an overall empowered outlook.

But in my experience, people (including me!) don’t get their buns in gear about e-health until a crisis arises. Then they have all the motivation and time in the world for it. The next question becomes, when that crisis arises, will they (and their support circle) have access to it, and even if they do, will they KNOW about it?

That’s where awareness comes in. Let’s think about some scenarios of different user types (“personas,” as they’re known in Web thought circles) and the sequence of events as they enter their own crisis and face the “What do I do now??” question.

http://www.eszter.com/research/

And while searching for this link I found Eszter’s blog, which links today to this CNN article, which is making the rounds for all the right reasons:

Tips for savvy medical Web searching
http://www.cnn.com/2008/HEALTH/02/21/ep.web.sites/index.html

Finally, here is a September 2006 report by the National Center for Education Statistics, “The Health Literacy of America’s Adults.”

http://nces.ed.gov/pubsearch/pubsinfo.asp?pubid=2006483