Thread by @GraceCordovano

1) So you get a copy of your medical records & dive in, reading line by line, trying to make sense of your new lung #cancer diagnosis.

“Wait a second, this doesn’t sound right. This is a mistake. I don’t have a history of a heart condition & I don’t smoke cigarettes.
#PtExp

2) You call your oncologist’s office to report the mistakes you found & ask to have it updated. You are told to write down the correction & fax it to the office. You do exactly that.
#PtExp #addendum #EHR

3) At your next follow up appt a month later, you ask the dr if your record was updated & the correction was made.

The dr looks at you like:

#PtExp #addendum #EHR

4) You stop at the front desk, write the correction down again, firmly say you need your record amended for continuity of care purposes, & they say they’ll take care of it.
#PtExp #addendum

5) Lather, rinse, repeat. Months later, it’s still not corrected. You also find out your cancer is progressing. The nurse asks if you are still smoking cigarettes.

#PtExp #addendum #EHR #patientadvocacy

6) Your treatment options are discussed but there are concerns of trying new medications bc of your heart condition. It may exclude you from a #clinicaltrial.
You are being treated (& feeling judged) based on the incorrect info in your medical records that you have tried to fix.

7) #Patients & their #carepartners are master curators of their data. I repeat: PATIENTS & CAREPARTNERS ARE MASTER CURATORS OF THEIR DATA.

There are endless stories of errors & omissions patients have found upon reviewing their medical records.

#PtExp #addendum #EHR

8) Some common mistakes that are noted include:
👉Incorrect diagnoses & conditions
👉Incomplete family histories, such as an extensive family history of cancer
👉Medications that you’ve never taken or have discontinued

#PtExp #addendum #EHR #PtEng

9) 👉Reports of pregnancies in those who have never been pregnant
👉Surgeries in people who have never been operated on
👉Symptoms that have never been experienced
👉Documented mental health illnesses from depression, bipolar disorder, to suicidal ideation where no history exists

10) Imagine getting a copy of your records & you find someone else’s bloodwork in your file or imaging report.
#PtExp #addendum #EHR

11) Imagine having an anaphylactic allergy to morphine & no matter how many times you make a note of it in your paperwork, it never makes it to your file. Some omissions can be DEADLY. #PatientSafety #addendum #EHR #UnblockHealth

12) Errors & omissions in medical records need to be fixed as soon as they are identified. It is a matter of #PatientSafety. It impacts continuity of care & treatment planning.
#UnblockHealth #PtExp #Addendums #PtEng

13) Have you ever tried to get your medical record amended?

It's real-life mission impossible.

#PtExp #Addendum #EHR #UnblockHealth

14) There's a cancer center of excellence in #NYC that has an addendum request form that only has a hard copy mailing address. No email. No fax number.

They asked me to drop off in person to make it faster.
#PtExp #EHR #addendum #UnblockHealth

15) Dear #DataBlockers,

We have vowed to not stand back silently, powerlessly, & helplessly any longer.

Sincerely Yours in #Interoperability & Patient Autonomy,
#UnblockHealth #addendum #EHR #PatientSafety #PtExp #PtEng

16) As someone who is passionate about #DigitalTech & #AI, this is the quality of data we are using to train new technologies & algorithms to improve healthcare????

GUYS, THIS IS NOT FINE.

#UnblockHealth #PtExp #EHR #CHC19 #innovation