Son of leg amputee patient: healthcare system works in silos where it should work across the silo

Amputated patient is trying to engage emergency care in digital age (or will die trying)

AUDIO VERSION (download audio file). This is a success story: listen to how a leg amputated patient is engaging emergency care in digital age!

Audio files on this blog are Windows files ; if you have a Mac, you might want to use VLC (http://www.videolan.org) to read them. 

Patients are more than their disease. "Engaged patients should be...embraced." #medx
— Abby Gopez (@abbyuun) January 17, 2014

Au fait avez vous signé la pétition me concernant ? Pétition lancée par Pedro Abrantés... http://t.co/LVXyR3Lssf
— Jean Michel Billaut (@Billaut) January 16, 2014

.@larrychu @StanfordMedX In my family: leg amputee patient cuz healthcare system works in silos where it should work across the silos #CDoM
— CATHERINE COSTE (@cathcoste) January 16, 2014

Son of leg amputee patient: healthcare system works in silos where it should work across the silo: (video in French)


Nicolas from Jean Michel Billaut on Vimeo.

About four years ago, my friend, a French digital economist (actually one of the top social media influencers in his country), felt a violent and sudden pain in his knee and the back of his leg, as he was playing with his three-year old grandson. Turns out it was his popliteal artery that was ailing. My friend had been experiencing what you might call the equivalent of a cerebrovascular accident, but instead of happening in his brain, the bad news was happening at the back of his left leg.

His son, a physician, calls 911 – or rather, the French equivalent of 911, as this is all happening in France. The son happens to work at the exact same place where the father lives. How convenient and ideal for an emergent patient! Optimal reaction time, as you might say. Excellent! Except that no ambulance was sent, in spite of the accurate description of popliteal aneurysm symptoms made by his son on the phone. Yes, you hear me, on the phone. I know, this is digital age, but guess what? (Non-) emergent patients are being triaged… on the phone. The whole thing seems to run by fortuneteller rather than by scientific standards, if you want my opinion…Anyway, the person operating the triage system in this particular circumstance did not deem it necessary to require an ambulance, so much for optimal reaction time and care. When finally the ambulance came, they were not sure exactly where to go so they just drove my friend around, see if they could find some available OR, and some available surgeon, vascular surgical specialty. 

"Sorry, that OR is not equipped for vascular surgery," "- oh ok, I see, well, we’ll try some other place then," and so on and so forth. 

Four hours later – and this is happening near Paris, mind you, not in the middle of nowhere! – my friend finally sees a surgeon… said surgeon wears a frown: “Not sure you can keep your leg… It looks bad… You should have come earlier…”

I kid you not.

Guess what happened next? My friend had to undergo several painful surgical procedures AND vascular surgeon could not avoid leg amputation. They could not save my friend's limb. Pay AND suffer.

The saddest thing of all is that this is only the beginning of the nightmare… I’ve been listening to him telling his story on various occasions in the course of the past few years and months and each time he sounded like whenever he was trying to explain his situation to medical and admin staff, he got "put in his place". A few days ago, he told his story on his blog, using real names and wrote about conversations that actually took place – but he ended up receiving threat phone calls: "We’ll harm your family if you don’t take this off your blog." That kind of thing.

He pressed charges (delayed treatment) and lost the trial. Dismissed case.

The point he wants to make? Our healthcare system works in silos where it should work across the silo. How about using telemedicine for patient triage?

"72% of Consumers Are Willing to See a Doctor Via Telehealth Video Conferencing in the US."(just about the same in France, I would guess)...

Now, how about some smartphone app that would signal which OR is available, in which surgical specialty, so that ambulances don’t have to drive a patient around for hours, trying to guess where they should drop him… Is emergency care bound to be like a shot in the dark – in digital age, when we have a 'killer app' for just about anything? Anything but health? How ironic!

Yet in the course of four years, we saw a lot of engineers, they offered their eager and friendly and expert help and advice to make appropriate apps and promote telemedicine. Now I'm thinking back at all the efforts we have deployed, and looking back at all the meetings we’ve held… but to little avail. We could have saved time. We could have saved energy. Why? Because, you know what? 

It is not in the best interest of those occupying a privileged or strategic position to listen to my friend and his embarrassing futuristic technological mood.

Click on the pic to view it full size

Whenever I listen to what my internet and futuristic minded friend has to say about digital economy in general and its disruptive aspects in particular, though, the "futuristic-technological-mood" thing just makes perfect sense!

Futur 2.0 loreal english final2 from Jean Billaut

FUTURE 2.0? Generations, myths, beliefs, religions, philosophies, technology and its use, added value and its distribution... by Homo Sapiens.

This presentation has been held at the Paris offices of  L'Oreal, in April 2012. It explains major shifts of paradigm happening right here and right now in medicine, business, economy, communication. Genomics and digital care combine for healthcare ... The global digital economy is getting in gear, reorganizing our entire economic system ... Open source technologies, wireless medicine, robotics ... Let's take a look at the facts ... How to survive and thrive?  Be on the lookout for information, as "the general who wins a battle is the best informed" (Sun Tzu, "The Art of War").

What happened to my friend could happen to me, it could happen to you, in fact it could happen to just anybody. Forget about France. Forget about the U.S. Because it's just the same story. Medicine is sick. How can we heal it? We don’t need lonesome cowboys, we need pit crews. Now saying this is as disruptive as it gets. Will surgeons let the patients hold the scalpel? I, for one, know the answer.

@bjfogg With my magic wand I'd aggregate the data patients collect thru apps so patients & MDs can understand, learn & act on it. #MedX
— Katy Schuler (@k_schuler) January 17, 2014

Set people up for SUCCESS. Much of the healthcare system design sets patients up for failure. Huge shift in design/thought needed, IMO #medx
— Emily Bradley (@chroniccurve) January 17, 2014

Post by Catherine Coste.

Health Care's 'Dirty Little Secret': No One May Be Coordinating Care - Kaiser Health News http://t.co/NVZ5bWTsgc via @khnews
— Robert J. Szczerba (@RJSzczerba) January 20, 2014

Pour que le dossier de Jean-Michel Billaut soit traité avec dignité http://t.co/EjvGbO4v5P via @ChangeFrance
— Jean Michel Billaut (@Billaut) January 20, 2014