“The Quantified Patient”: my talk at “Quantified Self” show&tell, December 2009

December 27, 2009 · Filed Under Why PM, medical records, policy issues, trends & principles · 21 Comments

The Quantified Self (aka “QS”) is an informal San Francisco based group of people who are tracking one thing or another about their lives. (Could it exist anywhere else??) They have occasional “Show&Tell” meet-ups, with elbow-rubbing and a series of quick talks, 10-15 minutes each.

A few weeks ago I was in town for a talk at the northern California chapter of HIMSS on personal health records. Matthew Holt of Health 2.0 and The Health Care Blog told me QS was meeting that Monday, at the headquarters of Wired magazine.

I registered, and at the end it asked “You wanna present?” I never say no to that, though I didn’t know what I’d talk about.

Turns out host Gary Isaac Wolf was really interested in the little spreadsheet where I’d tracked my tumor sizes as my treatment progressed. :–) So in the context of “quantified self,” my topic became “the quantified patient.”

This is an informal production – audio from a camcorder (no mic) blended with my slides and a few other images. It was fun: a responsive, engaged audience. Thanks to the QS gang for the opportunity.

Related notes -

QS is a project of Wired’s Gary Isaac Wolf (Associate Editor) and Kevin Kelly (Founding Executive Editor). “KK,” as he’s known, is also on the advisory board of our Journal of Participatory Medicine.
KK’s videos on Vimeo include several others from that night. (Arg: the room was so full the camera had to shoot the speakers from the side – no slides!)
Among the other presenters that night:
- Spectacular e-patient and #getupandmove entrepreneur Jen McCabe
- Spectacular human and entrepreneur Esther Dyson, also on JoPM’s advisory board.

Tags: 15 Minutes, Advisory Board, Associate Editor, Elbow, Entrepreneur, Esther Dyson, Executive Editor, Himss, Kevin Kelly, Kk, Matthew Holt, Mccabe, Mic, Northern California Chapter, Participatory, personal health records, Qs, Spreadsheet, Tumor Sizes, Ups, Vimeo

e-Patients Are Proud Deviants!

June 15, 2009 · Filed Under general · 10 Comments

The wonderful Atul Gawande delivered this past Friday a commencement address, titled “Money,” to the graduates of the University of Chicago Pritzker School of Medicine. He touched on and expanded on the theme of his groundbreaking article “The Cost Conundrum” that was reviewed on this site.

The transcript of the commencement address is definitely worth reading because it is another powerful call for structural changes. But it has one particular advantage for me. I learned of the Positive Deviants, a concept that has been in existence since the 80’s. This concept can explain what I have witnessed with ACOR for 14 years.

Because Positive Deviants derive their extraordinary capabilities from the identical environmental conditions as those around them, but are not constrained by conventional wisdoms, Positive Deviants standards for attitudes, thinking and behavior are readily accepted as the foundation for profound organizational and cultural change.

That is definitely how you would describe every one of the most active patient advocates you find on Twitter. Most of them have created large followings because they demonstrate an exceptional ability to think outside the box and create solutions to their particular problems.

I believe that we have not been attentive enough to the many positive deviants out there, who probably stand by the thousands, if not more, and that have found on their own, a personal solution to their main healthcare problems.

The strong reaction to Kevin Kelly’s Quantified Self blog post about the Journal of Participatory Medicine is a clear indication that, as the system is breaking down a little bit more every day, people have found many adaptative solutions that have never been catalogued, let alone studied. Note that studies about Positive Deviants consistently show that the single most important element in their patterned behavior is their passionate commitment expressed through their mental model. However, they don’t usually know they have a mental model and it is difficult for the new person to grasp the model because it is both unconscious and defined using highly abstract thinking. That sounds remarkably like all the e-Patients I have met!

As we build the Society for Participatory Medicine, it is my hope that we will embrace all the deviants, as long as they are of the positive type!

Tags: ACOR, Atul Gawande, Capabilities, Chicago Pritzker School, Commencement Address, Conundrum, Derive, Deviants, Environmental Conditions, Existence, Followings, Graduates, Groundbreaking Article, Healthcare Problems, Kevin Kelly, Medicine, Mental Model, money, Passionate Commitment, Patient Advocates, Personal Solution, Positive Attitudes, Pritzker School Of Medicine, School Of Medicine, Strong Reaction, University Of Chicago, University Of Chicago Pritzker, University Of Chicago Pritzker School Of Medicine, Worth Reading