We’re working on a full article about this, but most of you have probably seen that Judy Faulkner and her company, Epic, have asked their customers to send a letter to HHS asking for them to stop the health data blocking rule that’s about to be finalized. There’s a lot of nuance to this discussion which we’ll save for another post. However, Chrissy Farr from CNBC has discovered the names of all the ~60 hospitals and health systems that have signed on to this letter from Judy.
In response to this news, Carly Medosch, who is a chronic patient that also works at CMS, tweeted this incredible patient story that explained why she doesn’t trust hospitals and wants access to her data. I’ve unrolled it below for easy reading.
1/ I was relieved to hear that my Baltimore health systems aren’t on the list of organizations who signed the Epic letter supporting data blocking.
But the hospital that nearly killed me and tried to hold me hostage IS. 1/
2/ I was living in Virginia. And I’d previously driven an hour south to Richmond after very bad experiences around the time I was dx with Crohn’s disease as a teen. People thought my family was so stupid for driving “all that way.” But the level of care was great.
3/ There weren’t IBD specialists in my area, just general GI docs. So one day I was commuting home from NoVa and was in so much pain. My doctor sent me from his office to the hospital. I was in for 11 days. I was on 2-3x the appropriate dose of Dilaudid.
4/ Being in so much pain and on so much IV pain medicine significantly reduced my cognitive ability. I was not on my A game when it came to advocating for myself. My mom stayed with me the entire time.
5/ The docs decided I had some sort of tumor on my Fallopian tube. They did SEVERAL imagining tests and manual exams.
6/ On Sunday, September 11, 2005 one of my GI’s partners walked in and announced my white cell count was incredibly high. They believed the tumor had burst and they were going to rush me into surgery.
7/ Several problems here:
The other GI REFUSED to contact my doctor or even message him. This dude was on call that day and that was that. Even though I pointed out how dire the situation was. No dice.
8/ my GI’s colleague also REFUSED to transfer me to my established GI surgeon in Richmond (I had three prior abdominal surgeries). Remember I had driven an hour to Richmond for years because I did not trust the level of care available locally.
9/ the Doc left. My mom called my dad, my best friend, and our priest. It was Sunday so the priest was a bit busy but she insisted he come and perform Last Rites. I got my best friend’s voice mail and couldn’t bring myself to leave a message.
I honestly believed I would die.
10/ the reason the Doc gave for refusing to transfer me to my surgeon was “You wouldn’t make it in time.”
Richmond is an hour away under normal driving conditions. This man was saying I had an hour to live.
11/ Spoiler alert, but I did not die.
People ask why I didn’t sue. People ask why I didn’t ____.
When you are drugged you on IV painkillers for 11 days, told you have cancer, and an hour to live, you don’t call a lawyer, you don’t call your Senator. You call your family.
12/ 2005 Carly knew much less about how to fight for her rights, but honestly 2020 Carly, who has worked in federal health policy and patient advocacy, would likely still not know anything better to do in that hour.
13/ Over an hour passes. Literally no single medical person of hospital employee had come in my room in that time. No one popped in to let me know the plans they were making, or ask if I needed anything, or reassure me.
Eventually a gurney is wheeled in. I panic.
14/ These innocent transport dudes tell they are taking me to Richmond!!!
WHY DIDN’T ANYONE TELL ME THE PLAN SOONER? I honestly had felt like I was held hostage. I still don’t know why or how or when they changed their minds to let me go.
15/ the nurse dosed me with painkillers before I left. My parents were not allowed to ride in the ambulance. I was rolled in so that I was looking out the window in the rear door.
The ambulance got lost.
I tried to navigate but backward and drugged yo, it was difficult.
16/ One perk, I was assigned to a very swanky room in a new wing dedicated to women’s reproductive surgeries. The doctor there had a chance to review my films before I arrived. Within minutes of walking in, he said flat out “it’s not cancer, it’s your Crohn’s disease.”
17/ this hospital that had me inpatient for 11 days, did multiple physical exams, and was trying to hold me hostage to perform surgery against my will…
Did not even have the correct body part or diagnosis.
18/ anyway, so as I said I am alive and I hate that hospital system with a burning passion and would rather die on I-95 than go there for medical care.
When Jess Jacobs was alive, she called 9/11 my “life day” and I’ve tried to think of every year since 9/11/2005 as a bonus.
19/ so sorry not sorry if I’m too passionate about fixing the health system, making data accessable to patients & easily actionable (even those on a ton of painkillers). I almost died from inappropriate medical care and my friend Jess did.
I have a lot of skin in this game.