By MATTHEW HOLT
Strap in for the tale of why your hero is spending most of his life down YouTube rabbit holes of cardiology videos while blundering his way around many many medical centers and exposing many problems with American health care even before he gets close to the operating table. Yes it’s Matthew Holt’s pre-surgical complications – the complications that have arisen before he even gets his failing aortic valve fixed. And yes this is a multi-parter! Part 1, Part 2, Part 3
Getting in touch
But while knowing this stuff may be simple, actually getting to speak to the people at these medical centers is way more complicated. First you have to set up the data.
I knew they would want to see my images. The good news was that although I couldn’t see any of the images in my UCSF MyChart account, there’s a number to call on the bottom of the reports if you want to “download the image” and a very nice tech was able to upload all my images to a website that I could see called AmbraHealth (now part of Intelrad) within a couple of hours. Now I can share them with other people similar to sharing a Google doc.
But that was the easiest part.
I will spare you the blow by blow account but for example it took a long time for the people in the office of the main investigator at Cedars to figure out who the person managing the trial was so they could put me in touch with her. After I finally got to leave her a message she rang me back. I played phone tag with her for about a week. I did end up getting her email and sending out a bunch of my image reports and then she went on vacation and I didn’t hear from her for two weeks. First contact to appointment took 6 weeks.
At the same time I was trying Stanford Cardiology in order to try to get an appointment with Dr Yeung. First time I called after about 10 mins on hold I was told that I needed to have a referral. (Even though I’m on PPO style plan that doesn’t need one).
I pinged my long suffering PCP team at One Medical and asked them for a referral to talk to Dr Yeung which they sent out. A few days later I called the cardiology team at Stanford and eventually – I mean eventually, it was literally a 10 minute hold – they told me the referral wasn’t through yet. I asked if I could get them some images in advance, they said no. They were able to set me up on MyHealth which is their equivalent of the Epic’s MyChart. Funnily enough they had information on me from an emergency room visit I made there in the 1990s. But because I did not have an appointment set up yet I was not able to communicate using the messaging function on MyHealth.
So I called back a few days later and after another seven or eight minute hold I was told that I had an appointment set up for me and it was on MyHealth. But bizarrely the referrals and visits are buried in the “billing” section of MyHealth and then the appointment was on a sub-menu! And of course even though I could see it there was no way to communicate about the appointment.
This was even stranger as Stanford booked me both an echocardiogram and what’s called a CT angiogram which is a non-invasive angiogram using a CT machine. I had had both of these done at UCSF within the previous month.
I called yet again and got a hold of somebody who then passed me on to somebody else. After another 16 minutes on hold I was told that if I had these images I could upload them to the Stanford system, and they would send me an email explaining how.
I received that email 2 days later so I dutifully downloaded about 20 gigs of images from the UCSF system to my hard drive and then re-uploaded them to Stanford. Which of course was using the same Ambra Health system. On both UCSF Health & Cleveland Clinic‘s version of MyChart there’s the ability to both send a message and upload images from other facilities. Stanford Health Care‘s version has neither.
Meanwhile 4 days after it processed the claim paying for my angiogram at UCSF, Cigna sent me a letter saying that it had pre-approved the CT Angiogram at Stanford! Not exactly sure they.were being good stewards of their clients’ health care dollar. And of course the Stanford team didn’t need to do that test.
After I sent the PDF of the imaging reports to various people including Cleveland Clinic and Cedars they were able to make the requests directly to UCSF so they could access my images and I was also able to share those images from Ambra Health via email.
Going back to Stanford, after I uploaded all the images I got no communication back from Stanford. With only a week or so before my appointment there I was still due to get all this excessive imaging which I’d already had, which was incidentally going to cost somebody a lot more money. I called Cardiology at Stanford again, and eventually got through to somebody within “appointments” who said that they would look into it. They finally called me back and said yes that I did not need to have the imaging because they had the reports & the images from UCSF.
By the way, now that I’ve had the meeting at Stanford and seen the images they have, I think they have extra images that I don’t have in my Ambra Health server that they received directly from UCSF and are somehow sharing in a way I don’t understand.
Of course I was told nothing about this at any stage and had to be the one to instigate the entire thing.
So the image sharing seems to work behind the scenes but is opaque and confusing to the patient who is just trying to help! These images are outside of the main Epic system and require a bunch more steps both to be made available to the patient and for other doctors to see from other institutions.
And of course some institutions are worse. For example Sutter Health in the East Bay told me that I could not send them a link to the images because that would be a HIPAA violation. Oh yes that one’s never going to die, untrue as it is.
They wanted me to bring a CD with me. (Of course I don’t have a CD as UCSF put them online!)
The patient load
The amount of phone calls I’ve made and time spent on hold when it could have been handled by asynchronous messaging or AI voice agents is staggering. I’m almost addicted to that Cisco hold music.
I made a rather grumpy LinkedIn post about Stanford cardiology suggesting that, given it was in the center of Silicon Valley and there are about 50 companies selling voice AI customer service agents located a stone’s throw away, perhaps making patients stay on hold for 15 minutes to find out very basic stuff about the information or what images they could send around was not the best way of using their time.
You would think that Stanford Health Care would have an AI agent to answer your call, center of Sili valley and all that. You’d be wrong. 16 minutes on hold so far…. and no ability to message them about the issue (getting them imaging from UCSF) in their MyChart variant
1) No agent on their end is able to talk to you or deal with a basic inquiry. A never ending phone tree that gets to someone who then has to transfer you. Given the number of voice AI companies within a stones throw of Stanford, it’s hard to imagine it’s the best they can do
2) When after 16 mins I get to the patient coordinator all she can do is tell me that they can send me an email with a link to upload images to. But she can’t do that — she has to send a message to someone else.
I even had a couple of Stanford AI and clinical people respond, but I doubt much will change soon.
Speaking to real doctors and their teams OR the data is inexact or wrong
During this whole process I’m talking to ChatGPT, Claude and Inciteful Med trying to figure out what the AI god knows about who does what. When it started to mention the open surgery through the ribs a number of other names came up, most prominently a group at the University of West Virginia that has endoscopically done a lot of what’s called robot assistant valve replacement (RAVT).
After a number of calls with Cardiology at Cleveland Clinic and their patient journey nurses I eventually heard back from Dr Koprivanac’s NP. He had not done very many of the throat/transcervical robot assisted replacements, only about 15 over the last year. And sadly he didn’t think I was a candidate for that. He did think I was a candidate for the rib entry RAVR, although to be honest he hadn’t done that many of those either. But I spoke to his team and agreed to get a provisional booking on his schedule for the fall even if I knew I was unlikely to go through with it.
Meanwhile Claude told me that Dr Amy Fiedler at UCSF was an expert in RAMT (right anterior minithoracotomy–the non endoscopic rib entry technique). I sent a note to my original Cardiology group on the UCSF MyChart system saying that I understood she did this surgery and could I have an appointment with her? The appointment was set up.
It should not have been.
(Part 5 coming soon)
Matthew Holt is publisher of THCB
