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 means 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 it is a multi-parter! Part 1, Part 2, Part 3
Getting in contact
However whereas figuring out these items could also be easy, really getting to talk to the folks at these medical facilities is far more sophisticated. First it’s important to arrange the info.
I knew they might wish 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 reviews if you wish to “obtain the picture” and a really good tech was in a position to add all my photos to a web site that I might see referred to as AmbraHealth (now a part of Intelrad) inside a few hours. Now I can share them with different folks 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 folks within the workplace of the primary investigator at Cedars to determine who the individual managing the trial was so they may put me in contact together with her. After I lastly received to go away her a message she rang me again. I performed telephone tag together with her for a few week. I did find yourself getting her e-mail and sending out a bunch of my picture reviews 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 attempting Stanford Cardiology with the intention to attempt to get an appointment with Dr Yeung. First time I referred to as after about 10 minutes on maintain I used to be instructed that I wanted to have a referral. (Though I’m on PPO fashion plan that doesn’t want one).
I pinged my lengthy struggling PCP staff at One Medical and requested them for a referral to speak to Dr Yeung which they despatched out. A couple of days later I referred to as the cardiology staff at Stanford and finally – I imply finally, it was actually a ten minute maintain – they instructed me the referral wasn’t by means of but. I requested if I might get them some photos prematurely, they mentioned no. They had been in a position to set me up on MyHealth which is their equal of the Epic’s MyChart. Funnily sufficient they’d info on me from an emergency room go to I made there within the Nineteen 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 operate on MyHealth.
So I referred to as again just a few 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 regardless that I might see it there was no solution to talk in regards to the appointment.
This was even stranger as Stanford booked me each an echocardiogram and what’s referred to as a CT angiogram which is a non-invasive angiogram utilizing a CT machine. I had had each of those executed at UCSF inside the earlier month.
I referred to as but once more and received a maintain of any person who then handed me on to any person 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’d 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 arduous drive after which re-uploaded them to Stanford. Which in fact was utilizing the identical Ambra Well being system. On each UCSF Health & Cleveland Clinic‘s model of MyChart there’s the power 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 positive they.had been being good stewards of their shoppers’ well being care greenback. And naturally the Stanford staff didn’t want to try this take a look at.
After I despatched the PDF of the imaging reviews to varied folks together with Cleveland Clinic and Cedars they had been in a position to make the requests on to UCSF so they may entry my photos and I used to be additionally in a position to share these photos from Ambra Well being through e-mail.
Going again to Stanford, after I uploaded all the photographs I received no communication again from Stanford. With solely every 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 person much more cash. I referred to as Cardiology at Stanford once more, and finally received by means of to any person inside “appointments” who mentioned that they might look into it. They lastly referred to as me again and mentioned sure that I didn’t must have the imaging as a result of they’d the reviews & the photographs from UCSF.
By the way in which, 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 means I don’t perceive.
In fact I used to be instructed nothing about this at any stage and needed to be the one to instigate all the factor.
So the picture sharing appears to work behind the scenes however is opaque and complicated to the affected person who’s simply attempting to assist! These photos are outdoors of the primary Epic system and require a bunch extra steps each to be made out there 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 might be a HIPAA violation. Oh sure that one’s by no means going to die, unfaithful as it’s.
They needed me to deliver a CD with me. (In fact I don’t have a CD as UCSF put them on-line!)
The affected person load
The quantity of telephone 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 virtually hooked on that Cisco hold music.
I made a rather grumpy LinkedIn post about Stanford cardiology suggesting that, given it was within the heart of Silicon Valley and there are about 50 firms 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 fundamental stuff in regards to the info or what photos they may ship round was not one of the simplest ways of utilizing their time.
You’ll suppose that Stanford Health Care would have an AI agent to reply your name, heart of Sili valley and all that. You’d be improper. 16 minutes on maintain thus far…. and no capability to message them in regards to the situation (getting them imaging from UCSF) of their MyChart variant
1) No agent on their finish is ready to discuss to you or cope with a fundamental inquiry. A by no means ending telephone tree that will get to somebody who then has to switch you. Given the variety of voice AI firms inside a stones throw of Stanford, it’s arduous to think about it’s the very best they’ll do
2) When after 16 minutes I get to the affected person coordinator all she will be able to do is inform me that they’ll ship me an e-mail with a hyperlink to add photos to. However she will be able to’t do this — she has to ship a message to another person.
I even had a few Stanford AI and medical folks reply, however I doubt a lot will change quickly.
Chatting with actual medical doctors and their groups OR the info is inexact or improper
Throughout this complete course of I’m speaking to ChatGPT, Claude and Inciteful Med attempting to determine what the AI god is aware of about who does what. When it began to say the open surgical procedure by means of the ribs various different names got here up, most prominently a bunch on the College of West Virginia that has endoscopically executed lots of what’s referred to as robotic assistant valve substitute (RAVT).
After various calls with Cardiology at Cleveland Clinic and their affected person journey nurses I ultimately heard again from Dr Koprivanac’s NP. He had not executed very lots of the throat/transcervical robotic assisted replacements, solely about 15 during the last yr. 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 executed that a lot of these both. However I spoke to his staff 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 observe 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 shouldn’t have been.
(Half 5 coming quickly)
Matthew Holt is writer of THCB
