FHIR Chat · What autonomy looks like - T1D edition · patient empowerment

Stream: patient empowerment

Topic: What autonomy looks like - T1D edition


view this post on Zulip Dave deBronkart (Jun 21 2019 at 02:20):

I just ran across this 2016 post from the #OpenAPS movement.
“It’s not about the car – it’s about the drive.” #OpenAPS standing ovation for Mark Wilson.

It's a (sorry, but) brilliant description of patient experience. If you wonder about this "patient experience" stuff and you don't know what life is like with Type 1 diabetes, you gotta spend 31 minutes watching this. THEN you'll get why patient data access can be transformational.

Check out this metaphor - each of us is chained to our "car" (our body) for live. and if you have T1D, you spend GOBS of time monitoring the dashboard - and SOMEtimes you get to look ahead and enjoy life. A multi-pane screen capture from the talk's video:
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Also the OpenAPS people are like TOTAL believers in open source, because of the "all bugs are shallow" thing, re the software that's managing their survival.

Also they are totally fed up the irony of "better trained" "better credentialed" people thinking they know better than what the OpenAPS people are actually doing.

Autonomy is the ability to make one's own decisions about where to go in life. OpenAPS is the first massive transformation of this in a disease community.

(@Kelly Watson were you there for this?)

view this post on Zulip Dave deBronkart (Jun 21 2019 at 02:22):

Similarly, the famed ICD (implanted cardioverter / defibrillator) patient Hugo Campos expressed it this way in 2016: "I don't want to engage in my health. I want to engage in my life." Just brilliant.

view this post on Zulip Kelly Watson (Jul 09 2019 at 01:25):

Apologies for the late reply @Dave deBronkart – I've been getting catching up to all the great threads :)

I started participating in the #wearenotwaiting community in 2016 but wasn't at that DData event. It was a wonderful video to watch.


Last updated: Apr 12 2022 at 19:14 UTC