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Dave deBronkart Profile picture
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17 Dec, 4 tweets, 2 min read
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
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More from @ePatientDave

Dave deBronkart Profile picture
31 Aug
.@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
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
@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
@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
@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
Dave deBronkart Profile picture
31 Jan
@MarkGraban @evanluxzenburg So, this is where a savvy patient community can make all the difference. Problem is, not all diseases have savvy communities. My own incomplete cobbled list on my site: epatientdave.com/communities

/thread
@MarkGraban @evanluxzenburg Remember "the lethal lag time" - chances are very good that the 3 docs have different views of "latest / best information" epatientdave.com/2019/12/18/pri…

2/n
@MarkGraban @evanluxzenburg Then there's the nasty practical reality that surgeons & their friends often recommend surgery just Because. See @ElyseInOz e-patient origin story participatorymedicine.org/epatients/2009…

3/n
Read 9 tweets

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