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 this can be a multi-parter! Half 1, Half 2, Half 3
Getting in contact
However whereas figuring out these things could also be easy, truly getting to talk to the folks at these medical facilities is far more difficult. First it’s a must to arrange the info.
I knew they’d need to see my photographs. 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 studies if you wish to “obtain the picture” and a really good tech was capable of add all my photographs 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 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 principle investigator at Cedars to determine who the individual managing the trial was so they may put me in contact along with her. After I lastly acquired to go away her a message she rang me again. I performed telephone tag along with her for a few week. I did find yourself getting her electronic mail and sending out a bunch of my picture studies 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 identical time I used to be attempting Stanford Cardiology as a way to attempt to get an appointment with Dr Yeung. First time I known as after about 10 minutes on maintain I used to be informed that I wanted to have a referral. (Though I’m on PPO model 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. Just a few days later I known as the cardiology staff at Stanford and ultimately – I imply ultimately, it was actually a ten minute maintain – they informed me the referral wasn’t by way of but. I requested if I might get them some photographs upfront, they stated no. They have been capable of set me up on MyHealth which is their equal of the Epic’s MyChart. Funnily sufficient that they had data 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 capable of talk utilizing the messaging perform on MyHealth.
So I known as again a number of days later and after one other seven or eight minute maintain I used to be informed 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 solution 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 acquired a maintain of someone who then handed me on to someone else. After one other 16 minutes on maintain I used to be informed that if I had these photographs I might add them to the Stanford system, and they might ship me an electronic mail explaining how.
I obtained that electronic mail 2 days later so I dutifully downloaded about 20 gigs of photographs 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 Well being & Cleveland Clinic‘s model of MyChart there’s the flexibility to each ship a message and add photographs from different services. Stanford Well being 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 staff didn’t want to do this check.
After I despatched the PDF of the imaging studies to varied folks together with Cleveland Clinic and Cedars they have been capable of make the requests on to UCSF so they may entry my photographs and I used to be additionally capable of share these photographs from Ambra Well being by way of electronic mail.
Going again to Stanford, after I uploaded all the photographs I acquired no communication again from Stanford. With solely per week or so earlier than my appointment there I used to be nonetheless because of get all this extreme imaging which I’d already had, which was by the way going to value someone much more cash. I known as Cardiology at Stanford once more, and ultimately acquired by way of to someone inside “appointments” who stated that they’d look into it. They lastly known as me again and stated sure that I didn’t have to have the imaging as a result of that they had the studies & 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 further photographs that I don’t have in my Ambra Well being server that they obtained straight from UCSF and are by some means sharing in a means I don’t perceive.
In fact I used to be informed nothing about this at any stage and needed to be the one to instigate your complete 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 photographs are outdoors of the principle 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 informed 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 wished me to convey 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 maintain music.
I made a somewhat grumpy LinkedIn put up 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 concerning the data or what photographs they may ship round was not one of the simplest ways of utilizing their time.
You’d assume that Stanford Well being 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 to this point…. and no capability to message them concerning the challenge (getting them imaging from UCSF) of their MyChart variant
1) No agent on their finish is ready to speak to you or take care of 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 will 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 will ship me an electronic mail with a hyperlink to add photographs to. However she will be able to’t try this — she has to ship a message to another person.
I even had a few Stanford AI and scientific folks reply, however I doubt a lot will change quickly.
Talking to actual medical doctors and their groups OR the info is inexact or improper
Throughout this entire 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 way of the ribs quite a lot of different names got here up, most prominently a bunch on the College of West Virginia that has endoscopically accomplished loads of what’s known as robotic assistant valve alternative (RAVT).
After quite a lot of 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 most of the throat/transcervical robotic assisted replacements, solely about 15 during the last yr. And sadly he didn’t assume I used to be a candidate for that. He did assume I used to be a candidate for the rib entry RAVR, though to be trustworthy he hadn’t accomplished that lots 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 informed me that Dr Amy Fiedler at UCSF was an professional in RAMT (proper anterior minithoracotomy–the non endoscopic rib entry approach). 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 along with her? The appointment was arrange.
It mustn’t have been.
(Half 5 coming quickly)
Matthew Holt is writer of THCB
