Stream: patient empowerment
Topic: e-Patient Dave's "origin story" - why patients need data
Dave deBronkart (Jun 02 2019 at 03:21):
I have just begun a new series of blog posts on Tincture, the medical channel on Medium.
Post one was Saturday: A thousand points of fiscal pain”: a patient discovers healthcare’s Gordian knot … in 2009
Post 2 will be Sunday afternoon US time. I hope to post another each day, leading up to Seattle, where I'll be blogging daily (my version of singing for my supper).
This is, for me, an important stake in the ground, which I hope will be of use to interested parties here, and will make a credible case for why a patient would want to get their hands on data to either (a) create their own tools, and/or (b) aggregate their data into a more comprehensive dashboard, or (c) maybe just FACT CHECK what's in the providers' systems. It's called being an ENGAGED patient, vs being passive lump, a "car in a carwash" sort of patient.
@Grahame Grieve please take note, and please rope in anyone else who ought to be familiar with the genesis of this stuff.
Grahame Grieve (Jun 02 2019 at 07:39):
looks good. I'll look forward to more...
Dave deBronkart (Jun 02 2019 at 23:57):
This one will go live Monday afternoon ET. https://medium.com/@ePatientDave/a-cold-day-in-hell-2009-why-i-said-yes-to-google-health-55647bc52dc3
Dave deBronkart (Jun 06 2019 at 22:20):
HEY YOU YES YOU - if you're reading this stream I REALLY HOPE you'll read this blog sequence - it's shorter than a freaking textbook but I'm REALLY WORKING HARD to lay out the reasoning (and real-world necessity) for patient involvement!
- Saturday: “A thousand points of fiscal pain”: a patient discovers healthcare’s Gordian knot … in 2009
- Sunday: American healthcare is a malignant tumor that can’t stop killing its host
- Monday: A cold day in hell, 2009: why I said yes to Google Health
- Tuesday: An information quality trainwreck: Google Health revealed the mess in my hospital’s data
- Wednesday: My health data errors exploded in the newspaper. Why?
Update since initial post:
- Thursday: A movement starts: Gimme My Damned Data
Still to come:
- Friday: "Does FHIR provide what Google Health tried to?"
Dave deBronkart (Jun 07 2019 at 01:18):
Added Thursday: A movement starts: Gimme My Damned Data
Still to come:
- Friday: [Does FHIR provide what Google Health tried to?[(https://tincture.io/does-fhir-provide-what-google-health-tried-to-36caa5913d5b)
David Hay (Jun 07 2019 at 18:40):
picky point: In the first post you refer to FHIR as 'software' rather than as a standard for sharing - was that deliberate?
Dave deBronkart (Jun 07 2019 at 18:42):
Bless you for the sharp eye! How should it be worded? I'll change it asap. Thanks!
David Hay (Jun 07 2019 at 18:49):
NP - sometimes these things spring out! I think "standard for sharing health information" is kinda nice myself...
David Hay (Jun 07 2019 at 18:49):
While I'm on it "a cold day..." doesn't have a forward link...
David Hay (Jun 07 2019 at 19:01):
And - I note you mention the seattle devdays - can I do a shameless plug for my talk on fhir for clinicians - which should be just as good for patients who want to know more? (though it's a bit late)...
Dave deBronkart (Jun 07 2019 at 22:33):
Update: added today's post.
THIS IS THE MONEY SHOT, FOLKS. PLEASE FACT-CHECK. (Kristina Sheridan fact-checked her part.)
[Does FHIR provide what Google Health tried to?[(https://tincture.io/does-fhir-provide-what-google-health-tried-to-36caa5913d5b)
Last updated: Apr 12 2022 at 19:14 UTC
