http://www.thehealthcareblog.com/the_health_care_blog/2008/09/adding-layers-t.html

I’m so sorry the image isn’t showing up. We recently moved the blog to a new platform and it appears that some files were left behind. I will upload the image when I find it again, but in the meantime you can view the slide deck here (go to slide #9).

It is most unfortunate that most of the ACOR are populated mostly by caucasians. But within every list, if you pay attention, you can see enormous differences of education and financial abilities. These differences are never put in the open since everyone understands that they share something much more unique and profound that an educational degree or a golf club membership.

Belonging to a group of 100′s or thousand’s of sufferers of a rare and by definition often mis-diagnosed and mis-treated disease is one of the most powerful feelings people will ever experience.

The vast differences in personal expertise in these communities is what generate the now famous “wisdom of crowds”. That is how lay people can become, against all prior expectations, incredible micro experts, able to profoundly transform the odds of thousands of patients, single-handedly!

For centuries they’ve had a knack for connecting people with what they need. If I understand my history correctly, it made them quite a successful commercial nation for a long time.

More recently, I’ll never forget the “aha” moment I had in Amsterdam, late one night, when I noticed a bustling all-night pastry shop with the most delectable looking things in a front-window showcase. Bustling all-night pastry shop?? Then I noticed…. ohhhhh, it’s directly across the street from the front door of one of the city’s famous “coffee” houses.

Now that’s an entrepreneur.

On a more sober note, re people getting complacent and forgetting to advocate: my experience is that radicals are radicals, and some people (no matter how much they benefit from a shift) aren’t inclined to advocate. C’est la vie.

I want to read the article and think about the model. Sometimes I encounter someone who’s way ahead of me, and it usually doesn’t serve me well to react without reading the field reports. But that may not be for several days.

http://www.sramanamitra.com/2007/02/14/web-30-4c-p-vs/

Great points, especially with regards to ACOR and e-patients stirring the pot advocating for systemic innovation.

And consider this an open invitation to visit the Netherlands anytime; the Nexthealth crew loves company :).

Best -
Jen McCabe Gorman