@JenJamesPhD @AJSharmaMD When what's possible is evolving, I'm open to a wide range of POVs. I never lean toward suppressing innovation - but I also keep my eyes WIDE open for someone who's trying to get away with something.
/1 @JenJamesPhD @AJSharmaMD Some clueless SiliValley fool here said years ago patients should be HAPPY to donate all their data (free) to companies to use as assets in innovation, because, y'know, SiliValley are teh awesome and might save Mom's life someday, or maybe not, but AWESOME, dude. /2

@KTMcGraw_HIT @HITeaWithGrace Hi Grace! (Thx for flagging this, Katie.) There are so many buckets of things to say about this. I'll be back in a couple of hours but here are a first couple of responses: /1 @KTMcGraw_HIT @HITeaWithGrace 1️⃣ It's a mistake to generalize "consumers don't know what they don't know.":-) Some of us know a ton. It's an error (sometimes disastrous) to make policy for the lowest common denominator; it's inadvertent paternalism: "You don't understand - I'll take care of that for you" /2

🧵Incredible new book *by* #LongCOVID patients, curated by brill #LongCOVID pt @fi_lowenstein of @ItsBodyPolitic
Patient truth goes beyond what clinics know. In 1st pt story I discovered my wife's weird recent hives are post-COVID! Doc didn't know.
epatientdave.com/2022/11/16/the…
/more Also didn't realize the intimate relationship between #Dysautonomia / #POTS / #MECFS & #LongCOVID, incl the risk of many docs not yet trained to recognize them - and how pts can do a "poor man's tilt table" test to prediagnose POTS.

HT @SusannahFox for the book tip! /more

Listen my children and you shall hear
How a proactive patient, informed and with fear
Can still get the COVIDs when warned by his gear
By nonetheless thinking "It can't happen here." I circulated this to a college alumni circle & @PaulFLevy urged me to fess up broadly. It's embarrassing & true & underscores that THIS SCIENCE STUFF ACTUALLY MATTERS. And there are idiots who are unable to avoid endangering us because they get hired by slacker companies. OK:

@BeLikeLight @RemRunner @TEDTalks @TEDx Hi Julie! I'd be happy to discuss the potential blind spots in that earnest perspective. For starters, if they talk to *doctors* all day, does that mean there's no value going to conferences where doctors speak?

It's not a snarky question. Really think about it. (cont'd) @BeLikeLight @RemRunner @TEDTalks @TEDx There's a chance the implied message is "I doubt there's anything new I could learn from any patient I haven't met." That is (honestly) a sure-fire way to become out of touch and get blind-sided.

ANNOUNCING A BIG DEAL, in a free (but real) test. Through Sunday:

@PocketHealthHQ, where I'm Chief Patient Officer, is testing an exciting new product to let patients & caregivers retrieve imaging records and reports from ANY PROVIDER IN NORTH AMERICA. Help test it./1 They're offering early access to friends & families of employees to try out this new product & provide feedback on their experience.

Fill out the data request form below (takes about 5 minutes). All personal information and records will be kept strictly confidential. /2

@pheski @KDrum @PHEski Since my glaucoma diagnosis a year ago this has been a major complaint. (short thread) First: epatientdave.com/2021/12/21/why… @pheski @kdrum I was aggravated by how hard it is to do this essential thing (instilling eye drops) (why haven't they fixed this???), then further aggravated a few months ago upon discovering this 2017 @Marshall_Allen @Propublica expose of the eye drop business. propublica.org/article/drug-c… 2/

@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…
/more @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
/more

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

.@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. 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.

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 &

@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.
...

@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

@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

@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

#? Thinking about #surpriseMedicalBills ...
- Does any U.S. agency have authority over this?
- How/why is this business practice different in medicine than other industries?
- Is there a national registry of hospitals who do and don't do it?

1/ One thing's certain: EVERYONE talking about importance of #patientExperience damn well better have an ironclad policy against #surpriseMedicalBills and against suing patients.

Patient experience doesn't end at discharge. /end

"Reformulating the algorithm so it no longer uses costs as proxy for needs eliminates the racial bias in predicting who needs extra care."

Only a fricking INSURANCE COMPANY would think actual NEED shows up in past spending. Damn. continued -
cc @MathBabeDotOrg

https://twitter.com/sciencemagazine/status/1187723048776093697

If I understand correctly, this appears to be exactly the kind of self-reinforcing algorithmic death spiral Cathy O'Neil @MathBabeDotOrg described in the excellent Weapons of Math Destruction. Alg fed by biased histories presumes your current state is a reliable predictor. /2

@mdstrickland13 @AdmSideofSick @DermHAG @EricTopol @LeahHoustonMD I'm no fan of the horrid usability of these systems, but it's way off target to say the feds "inflicted lousy EHRs" on our system. I was at a fair number of DC meetings in that era, and what I was hearing was VENDOR PUSHBACK about the feds WANTING usability criteria. /thread @mdstrickland13 @AdmSideofSick @DermHAG @EricTopol @LeahHoustonMD Here's my own speech to AHRQ's IT grantees and contractors, June 2010, railing against that dispute, which was going on in those halls right then. epatientdave.com/2011/03/24/new…
/more

This is a perfect illustration of what "tokenism" looks like in a "patient advisory council."

Folks, it's tokenism if it looks fascinating but you have no power to influence decisions that you think are important. NOT FREAKING SHOE COLOR. Or lobby waterfalls. #MedX

https://twitter.com/Britta34/status/1175111179867320320

#MedX Here's a great tweet with a classic image of Arnstein's Ladder of Citizen Participation (1960s). On rungs 6-8, the citizen has actual power to decide what gets discussed and what decisions get made. Below that is defined as token participation. Tokenism.

Hands down, this is the most amazing and transformational thing I've ever seen in my ten years of wondering about healthcare. Unbuckle your "safety belts" and see if you can hear what's described here.

And it's in Lancet.

Can you?

https://twitter.com/EricTopol/status/1149709737455263744

I'm going to post several tweets in a slow-mo thread here, responding to @PHEski's 10 responses last night. (I'm trying to be organized here, amid a rich discussion that's already turned into forks & branches.)

Please see his, which start here

https://twitter.com/ePatientDave/status/1149872936511246336

1/n

Bonus #hcldr: I don't hear anyone else saying it so I'll say the (?)obvious:

A seat at the table is not enough. That's where tokens sit: "Token Negroes," "token women," "token patients." Tokenism is what you get in the MIDDLE of Arnstein's ladder, not the power tiers. 1/2 #hcldr

https://twitter.com/hcldr/status/1136080445475418112

2/2 Bonus #hcldr Here again is Arnstein's Ladder - from the LBJ administration, when citizens yelled for a voice in whether their NEIGHBORHOOD got torn down for highways. A token "seat at the table" got them nowhere - they needed POWER.