By MATTHEW HOLT
Strap in for the story of why your hero is spending most of his life down YouTube rabbit holes of cardiology movies whereas blundering his method round many many medical facilities and exposing many issues with American well being care even earlier than he will get near the working desk. Sure it’s Matthew Holt’s pre-surgical problems – the problems which have arisen earlier than he even will get his failing aortic valve mounted. And sure this can be a multi-parter! Part 1, Part 2, Part 3
Getting in contact
However whereas realizing these things could also be easy, really getting to talk to the individuals at these medical facilities is far more sophisticated. First it’s important to arrange the info.
I knew they might need to see my photos. The excellent news was that though I couldn’t see any of the photographs in my UCSF MyChart account, there’s a quantity to name on the underside of the stories if you wish to “obtain the picture” and a really good tech was in a position to add all my photos to an internet site that I might see known as AmbraHealth (now a part of Intelrad) inside a few hours. Now I can share them with different individuals just like sharing a Google doc.
However that was the best half.
I’ll spare you the blow by blow account however for instance it took a very long time for the individuals within the workplace of the principle investigator at Cedars to determine who the particular person managing the trial was so they might put me in contact together with her. After I lastly bought to go away her a message she rang me again. I performed cellphone tag together with her for a couple of week. I did find yourself getting her e mail and sending out a bunch of my picture stories after which she went on trip and I didn’t hear from her for 2 weeks. First contact to appointment took 6 weeks.
On the similar time I used to be making an attempt Stanford Cardiology with the intention to attempt to get an appointment with Dr Yeung. First time I known as after about 10 minutes on maintain I used to be instructed that I wanted to have a referral. (Though I’m on PPO type plan that doesn’t want one).
I pinged my lengthy struggling PCP workforce at One Medical and requested them for a referral to speak to Dr Yeung which they despatched out. A number of days later I known as the cardiology workforce at Stanford and finally – I imply finally, it was actually a ten minute maintain – they instructed me the referral wasn’t via but. I requested if I might get them some photos upfront, they mentioned no. They have been in a position to set me up on MyHealth which is their equal of the Epic’s MyChart. Funnily sufficient that they had info on me from an emergency room go to I made there within the Nineties. However as a result of I didn’t have an appointment arrange but I used to be not in a position to talk utilizing the messaging perform on MyHealth.
So I known as again a couple of days later and after one other seven or eight minute maintain I used to be instructed that I had an appointment arrange for me and it was on MyHealth. However bizarrely the referrals and visits are buried within the “billing” part of MyHealth after which the appointment was on a sub-menu! And naturally despite the fact that I might see it there was no approach to talk concerning the appointment.
This was even stranger as Stanford booked me each an echocardiogram and what’s known as a CT angiogram which is a non-invasive angiogram utilizing a CT machine. I had had each of those accomplished at UCSF throughout the earlier month.
I known as but once more and bought a maintain of any individual who then handed me on to any individual else. After one other 16 minutes on maintain I used to be instructed that if I had these photos I might add them to the Stanford system, and they might ship me an e mail explaining how.
I obtained that e mail 2 days later so I dutifully downloaded about 20 gigs of photos from the UCSF system to my laborious drive after which re-uploaded them to Stanford. Which after all was utilizing the identical Ambra Well being system. On each UCSF Health & Cleveland Clinic‘s model of MyChart there’s the flexibility to each ship a message and add photos from different services. Stanford Health Care‘s model has neither.
In the meantime 4 days after it processed the declare paying for my angiogram at UCSF, Cigna despatched me a letter saying that it had pre-approved the CT Angiogram at Stanford! Not precisely certain they.have been being good stewards of their purchasers’ well being care greenback. And naturally the Stanford workforce didn’t want to do this check.
After I despatched the PDF of the imaging stories to varied individuals together with Cleveland Clinic and Cedars they have been in a position to make the requests on to UCSF so they might entry my photos and I used to be additionally in a position to share these photos from Ambra Well being by way of e mail.
Going again to Stanford, after I uploaded all the photographs I bought no communication again from Stanford. With solely per week or so earlier than my appointment there I used to be nonetheless as a result of get all this extreme imaging which I’d already had, which was by the way going to value any individual much more cash. I known as Cardiology at Stanford once more, and finally bought via to any individual inside “appointments” who mentioned that they might look into it. They lastly known as me again and mentioned sure that I didn’t have to have the imaging as a result of that they had the stories & the photographs from UCSF.
By the best way, now that I’ve had the assembly at Stanford and seen the photographs they’ve, I feel they’ve additional photos that I don’t have in my Ambra Well being server that they obtained straight from UCSF and are one way or the other sharing in a method I don’t perceive.
After all I used to be instructed nothing about this at any stage and needed to be the one to instigate your entire factor.
So the picture sharing appears to work behind the scenes however is opaque and complicated to the affected person who’s simply making an attempt to assist! These photos are outdoors of the principle Epic system and require a bunch extra steps each to be made obtainable to the affected person and for different medical doctors to see from different establishments.
And naturally some establishments are worse. For instance Sutter Well being within the East Bay instructed me that I couldn’t ship them a hyperlink to the photographs as a result of that will be a HIPAA violation. Oh sure that one’s by no means going to die, unfaithful as it’s.
They needed me to carry a CD with me. (After all I don’t have a CD as UCSF put them on-line!)
The affected person load
The quantity of cellphone calls I’ve made and time spent on maintain when it might have been dealt with by asynchronous messaging or AI voice brokers is staggering. I’m nearly hooked on that Cisco hold music.
I made a rather grumpy LinkedIn post about Stanford cardiology suggesting that, given it was within the middle of Silicon Valley and there are about 50 corporations promoting voice AI customer support brokers positioned a stone’s throw away, maybe making sufferers keep on maintain for quarter-hour to search out out very primary stuff concerning the info or what photos they might ship round was not one of the best ways of utilizing their time.
You’ll suppose that Stanford Health Care would have an AI agent to reply your name, middle of Sili valley and all that. You’d be incorrect. 16 minutes on maintain to date…. and no capacity to message them concerning the concern (getting them imaging from UCSF) of their MyChart variant
1) No agent on their finish is ready to speak to you or cope with a primary inquiry. A by no means ending cellphone tree that will get to somebody who then has to switch you. Given the variety of voice AI corporations inside a stones throw of Stanford, it’s laborious to think about it’s the most effective they’ll do
2) When after 16 minutes I get to the affected person coordinator all she will do is inform me that they’ll ship me an e mail with a hyperlink to add photos to. However she will’t try this — she has to ship a message to another person.
I even had a few Stanford AI and scientific individuals reply, however I doubt a lot will change quickly.
Chatting with actual medical doctors and their groups OR the info is inexact or incorrect
Throughout this complete course of I’m speaking to ChatGPT, Claude and Inciteful Med making an attempt to determine what the AI god is aware of about who does what. When it began to say the open surgical procedure via the ribs numerous different names got here up, most prominently a gaggle on the College of West Virginia that has endoscopically accomplished numerous what’s known as robotic assistant valve alternative (RAVT).
After numerous calls with Cardiology at Cleveland Clinic and their affected person journey nurses I ultimately heard again from Dr Koprivanac’s NP. He had not accomplished very lots of the throat/transcervical robotic assisted replacements, solely about 15 during the last 12 months. And sadly he didn’t suppose I used to be a candidate for that. He did suppose I used to be a candidate for the rib entry RAVR, though to be sincere he hadn’t accomplished that lots of these both. However I spoke to his workforce and agreed to get a provisional reserving on his schedule for the autumn even when I knew I used to be unlikely to undergo with it.
In the meantime Claude instructed me that Dr Amy Fiedler at UCSF was an knowledgeable in RAMT (proper anterior minithoracotomy–the non endoscopic rib entry method). I despatched a word to my unique Cardiology group on the UCSF MyChart system saying that I understood she did this surgical procedure and will I’ve an appointment together with her? The appointment was arrange.
It mustn’t have been.
(Half 5 coming quickly)
Matthew Holt is writer of THCB
