Thread by @GraceCordovano

Lots of thoughts & opinions on patient #DataAccess & data sharing, figured I'd jump in. Take a seat for a few. I'll make it worth your while.

THREAD 👇👇

#PatientAdvocacyProblems #UnblockHealth #hcldr #hitsm #medtwitter @S4PM #EHR #DataBlocking #pinksocks #PtExp

@S4PM 1) A patient with multiple comorbidities has been in & out of the hospital w/what now has been diagnosed as advanced congestive heart failure. At about 5 pm yesterday (Fri), patient & family were told to seek a 2nd opinion asap. Told patient being discharged today. #UnblockHealth

@S4PM 2) The urgent 2nd opinion is to see if the patient is a candidate for a particular procedure. If not, #hospice. Appt can’t be scheduled until ALL records & images on CD are received & reviewed by the 2nd opinion dr’s office (at another hospital, in another state.) #UnblockHealth

@S4PM 3) Patient & family asked care team to forward records & images on CD to expert that will be doing 2nd opinion. Family told to go to the medical records office. Medical records office was closed bc it was now about 6 pm on Friday night. #UnblockHealth

@S4PM 4) The family returned to the hospital today to pick up the patient being discharged & stopped by the medical records office.

It was closed

For the weekend

Until Monday. (Bc illness & matters of life & death follow business hours.)

#PatientAdvocacyProblems #UnblockHealth

@S4PM 5) Portal hasn't been updated w/all the critical test results, radiology reports, or anything useful from this or the previous hospital admission. No images: MRIs, X-rays, or angiograms. There’s no way to report this back to the hospital to say:

WHERE'S MY INFO? #UnblockHealth

@S4PM 6) We filled out a medical & a radiology records request, emphasizing urgency. Family was advised to go to the med records office &

SLIDE THE SIGNED REQUEST UNDER THE CLOSED DOOR

so when they open the office on Monday morning they’ll <step on it> receive it.

#UnblockHealth

@S4PM 7) There’s been no shortage of controversy & debate as to whether patients should/shouldn’t have access to their records, “concerns” patients need to be protected, that they are too naïve, too incapable, that access should be restricted to “protect their safety”. #UnblockHealth

@S4PM 8) Even op-eds stating data sharing rules will unfairly damage a state’s economy & EPIC trade secrets.

madison.com/wsj/opinion/co…

#UnblockHealth @EPICEMRparody

@S4PM 9) While everyone's worried about their "business use cases" for patient data, about shaping a robust, profitable digital app economy, lobbying to “protect” patients from the "villians" in the game,

PATIENTS ARE DYING WAITING TO GET COPY OF THEIR RECORDS.

#UnblockHealth @S4PM

@S4PM 10) So they can be engaged in their care. So they can be compliant. So they can schedule their appts. So they can confirm the appt with their new dr is in-network. So they can do everything they can to avoid the ER.

We’re trying. We're NOT the problem.

#UnblockHealth

@S4PM 11) Everyone says “We’re all patients” or “We’ll all be patients one day.”

#PatientAdvocacyProblems #UnblockHealth

@S4PM 12) There’s a difference between the whim of “one day” & living hell on earth, in limbo, your outcomes, your life, your everything waiting on getting a copy of your medical records to see if you can make a dr appt for a last attempt to save your life.

#UnblockHealth

@S4PM 13) While everyone's talking about the need for patient data to (one day) power research to improve patient care, hospital operations, patient safety, outcomes, drug discovery, #AI, pophealth, & benefit every databroker & agent w/interest in data for profit$ sake,
#UnblockHealth

@S4PM 14) millions of patients can’t get the care they need now, TODAY, because we as an ecosystem have FAILED to all commit to end #InformationBlocking that denies patients access to their own information when they need it.

#PatientAdvocacy #UnblockHealth

@S4PM 15) Unless we can all come together, in a unifying pact, a legal agreement, to TRULY give patients access to their data, we have nothing to be proud of.

We must stop debating & pointing fingers & ALL commit to Do No Harm FIRST, as opposed to business models.

#UnblockHealth

@S4PM 16) Excuse me while I go see the patient’s grandchildren, to reassure them that we are doing everything we can to:
👉get their beloved grandparent the records they need
👉to make the appt they need
👉to get the care that they need

#PatientAdvocacy #UnblockHealth

@S4PM 17) so they can have their grandparent at their winter concert this month, & their birthdays next month, & watch March madness w/them, & Easter, & as many days after that.

Because you see,

these are the things that matter.

#PatientAdvocacy #UnblockHealth

@S4PM 18) Let me be clear: NO ONE is immune from the #DataBlocking millions of patients face each day. Imagine being told that your life is on the line & you are advised to slip a piece of paper under the door, & wait.

Are you ok w/that?

I’m not.

#PatientAdvocacy #UnblockHealth