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Dave deBronkart Profile picture
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8 Apr, 6 tweets, 6 min read
@JFreemanDaily @SusannahFox @gfry Thread:
Here's the last edition (2015) of the Pew Health Tips page summarizing Susannah's research, before Pew stopped publishing it. pewinternet.org/Commentary/201…
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@JFreemanDaily @SusannahFox @gfry An interesting question is why someone's ASKING you for proof that people aren't ignorant. Sounds to me like they're not looking to improve care, but are for some reason looking for excuses not to modernize ... ironically by being ignorant.
dave.pt/googlemug
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@JFreemanDaily @SusannahFox @gfry As for surveys: "S4PM Survey Shows People Want to Collaborate with Their Doctors and Co-Produce Their Clinical Data" participatorymedicine.org/epatients/2016…
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@JFreemanDaily @SusannahFox @gfry .@PFAnderson Up to you but honestly I personally might cock my head and ask, with honest wonderment, "Why are you asking that?? Clearly it's happening: some engaged patients are definitely adding value. Shouldn't we be wondering how to do MORE of that??"
/end
@JFreemanDaily @SusannahFox @gfry @threadreaderapp unroll svp
@JFreemanDaily @SusannahFox @gfry Oh crap I got the URL wrong. Here's the Wayback Machine archive of it. web.archive.org/web/2014020821…

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More from @ePatientDave

Dave deBronkart Profile picture
17 Dec 20
Hey patient activists - do you know of dangerous errors in someone's medical record, the kind that can cause harm or diagnostic errors? Want to help improve that?

Orientation for developers Thursday 1pm ET; public (YOU) is welcome. Blog post:
confluence.hl7.org/pages/viewpage…

/thread
The @HL7 #FHIR Patient Empowermt group has an APPROVED PROJECT to define data standards to submit correction requests through apps.

Sound like a worthy project? Our first "Connectathon" is in Jan, & Thurs 12/15 @ 1pm ET is an orientation for software devels. ALL INVITED. /2
Patients & non-coders, all are welcome; HL7 meetings are all fully open. Beware - this is a technical meeting - but it will be great if a few dozen patient voices show up with moral support for this important project!

GoToMeeting 1pm ET Thurs: global.gotomeeting.com/join/322275573 /end
Read 4 tweets
Dave deBronkart Profile picture
31 Aug 20
.@AnthemBCBS I'm pretty sure you hope somebody will be able to undo the erroneous "noncompliance" letter you faxed my doctor because yr computers apparently have REALLY bogus logic in them.

46 minutes into this call so far; this 3rd lady doesn't know why they xferred me to her. Image
Note: none of the four response options he can send you includes "Sorry, Anthem, you're wrong - remove the false 'noncompliance' assertion from his record."

You will be looking into this & correcting my record, I'm sure. I don't mess around w malprogrammed medical records.
Please note, too, @AnthemBCBS, that none of the agents I spoke to on your Rx member services line had any clue how to even FIND OUT where such a letter would have come from.

Let's talk & get this sorted out.
Read 5 tweets
Dave deBronkart Profile picture
27 Jul 20
Ladies & gentlemen: I'm SO THRILLED to participate in this announcemt! My new business partner: Toronto-based "Gimme My DaM Data" radiology image retriever PocketHealth! Direct result of my #SIIM18 keynote & #OpenNotes work.

There's work to do - game on! news.pocket.health/2020/07/27/adv…
cc @MightyCasey & @GraceCordovano & @stacy_hurt & @Lygeia & @boltyboy & @claudiawilliams & @HealthPrivacy & @DrDannySands & @zakkohane & @JoshCMandel & @HealthIT_Policy & @GrahameGrieve & @FirelyTeam & @MoehrkeResearch & @RasuShrestha & @shadowdoc & @MyPatientLink & @TheLizArmy &
& @hmkyale & @ctlin1 & @pnagy73 & @chrissyfarr & @SterlingHIT & @GeriLynn & @subatomicdoc & @bfm & @pjonwhite
Read 5 tweets
Dave deBronkart Profile picture
25 Jul 20
@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy We can dig through all the e's but people keep adding to then, as befits a social movement. More important and useful IMO are example stories. I joined a patient community as did @jfreemandaily and each found useful info that helped save us. ...
@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare is highly engaged in self awareness, self monitoring, even defining her own protocols. Each of these is the opposite of a passive disengaged patient.
...
@JFreemanDaily @MightyCasey @BraveBosom @GraceCordovano @lymepolicywonk @khoney @mike_mitt @draparente @ThePatientsSide @TheLizArmy @SaraRiggare Another classic is @HugoOC who very much wants all his heart's data but @Medtronic continues to stiff him. So @AliveCor empowers him and enables him to be engaged and informed.
...
Read 13 tweets
Dave deBronkart Profile picture
29 May 20
@rickybloomfield From comments on that post: Debi of @MyPatientLink used the app she created to spot dangerous polypharmacy (from 3 states away) to rescue mom from real trouble. participatorymedicine.org/epatients/2020…

more ...
@rickybloomfield @MyPatientLink Sadly, her father too was severely mismanaged but thru the app she was able to get his problem correctly identified to ease his intense pain in his final days. participatorymedicine.org/epatients/2020…

Note: in both cases this was data the providers had & were failing to manage. #LetPatientsHelp
@rickybloomfield @MyPatientLink In another comment @VincentKeunen linked to why he developed his app participatorymedicine.org/epatients/2020…. (It's telling that so many people who encounter these problems DEVELOP apps, if they can.)
Read 10 tweets
Dave deBronkart Profile picture
5 Mar 20
@jameyedwards @HIMSS @nickisnpdx @andrewintech @Colin_Hung @healthythinker @healthblawg @evankirstel @IrmaRaste @boltyboy @jessdamassa @JohnNosta I too heartily applaud @HIMSS for the very difficult and costly decision to cancel #HIMSS20. It's my hope that other events around the world will join in clamping down to minimize the spread of this disease. When it's over we can look back. /cont'd
@jameyedwards @HIMSS @nickisnpdx @andrewintech @Colin_Hung @healthythinker @healthblawg @evankirstel @IrmaRaste @boltyboy @jessdamassa @JohnNosta I have to say, cancelling conferences is a *bitch* for the speaker business. This year's gigs for me include Croatia (cancelled today), South Korea (oops), Milan (oops). /2
@jameyedwards @HIMSS @nickisnpdx @andrewintech @Colin_Hung @healthythinker @healthblawg @evankirstel @IrmaRaste @boltyboy @jessdamassa @JohnNosta But let me also say, it illustrates why science and strong #PublicHealth are so important. Without them we die defenseless, like the plague. Anyone who says they don't trust science has no right to take any medicine.

In any case, again, praise to @HIMSS leadership. 🙏🙌
/end
Read 4 tweets

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