I am now in a similar position watching, recording, ‘stewarding’ my mothers process as she’s been newly diagnosed with breast cancer.

I know your comment: ‘Solutions need to consider the patient’s ecosystem rather than their illness’ was offered in the context of the downstream chaos associated with non-acute, chronic needs of patients, yet don’t omit the real time chaos of the acute episode absent proactive, patient centered coordination of needs.

Even in a cancer center, domiciled in a ‘system’ claiming rave third party reviews including HIMSS EMR adoption status, has many ‘patient experience gaps’ yet to identify and address.

Thanks Alan!

Thank you for your beautiful, deeply personal and very powerful post. The saying that has appeared countless times on the ACOR communities for 15 years applies remarkably to it:

Sorry you have to be here but delighted you found us!

What an amazing story.

For anyone having to deal personally with a catastrophic or life-threatening medical condition there is a time before, The Moment, when you realize you must take charge in order to get optimal care, and then the rest of your life. Your post seems to be yet another description of this essential evolution. It’s hard to imagine that coming from your position of medical excellence you still have to deal with the terrible realities of the current US system where patient participation is not actively encouraged.

More comments later!

Thank you so much for sharing your story. There are so many layers to it that I wasn’t sure where to start, but serendipity pointed me to a related post by Andrew Wilson:

Check-ins for Health
http://andrewpwilson.posterous.com/check-ins-for-health

He talks about how geolocation/social network services like Foursquare might be deployed to create consumer reviews of health services.

Phil Baumann has also written about the health applications of Foursquare, in a more metaphysical way:

Foursquare Is Powerful Enough to Cure Insomnia and Depression
http://philbaumann.com/2010/01/17/foursquare-is-powerful-enough-to-cure-insomnia-and-depression/

(I’m totally the Mayor of Too Much Coffee right now, for example.)

I’ll repeat the comment I posted on Andrew’s blog so we can discuss it here, too:

Why is it that we can easily pull up restaurant reviews but not nursing home reviews?

Of course one answer is that many more people frequent restaurants — and it’s more fun to review food than to review health care services — but among those who care, such peer-to-peer advice would be welcome. Pew Internet survey data shows, for example, that chronic disease makes it more likely for someone to consume user-generated content and to participate in the online conversation. These are people who are generally at the low end of tech adoption – among the least likely to have an internet-enabled mobile device, for ex – but they are taking advantage of what they have. As I put it recently, they are evolving (and why can’t online services/health care services evolve too?)