Cross-posted from e-patients.net
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.
This sounds like a great new way for pharma companies to keep their customers involved as well as help educate them from home.
-Steph
Follow me @L2_Pharma
Of course – pharma companies, like any other company, are smart to keep their customers involved. They just need to be keenly aware of their well-earned reputation problems for corrupt disinformation, and be aware that e-patients are no fools – if pharma tries to co-opt the e-patient concept and (for instance) not fully disclose the downside of their products, they’ll find themselves in an even deeper hole than in the past, except this time with a more empowered distrustful watchdog than ever. :-)
For instance, I’m the first to say that high dosage Interleukin-2 saved my life. I also point out that it usually doesn’t work, and the side effects are “often severe and rarely fatal,” as the FDA requires the company to say.
That’s why when I spoke at my first pharma marketing conference in October, my talk was titled “Engage Authentically.” (Video of that speech is on my Speaking page.)