In Search of Intra-Aero-Bili-ty

Today is the kick-off of the vendor-fest that is HIMSS. Late last week on THCB, ONC director Karen De Salvo and Policy lead Jodi Daniel slammed the EMR vendors for putting up barriers to interoperability. Last year I had my own experience with that topic and I thought it would be timely to write it up. (I’ll also be in the Surescripts booth talking about it at 3.45 Monday)

I want to put this essay in the context of my day job as co-chairman of Health 2.0, where I look at and showcase new technologies in health. We have a three part definition for what we call Health 2.0. First, they must be adaptable technologies in health care, where one technology plugs into another easily using accessible APIs without a lot of rework and data moves between them. Second, we think a lot about the user experience, and over eight years we’ve been seeing tools with better and better user experiences–especially on the phone, iPad, and other screens. Finally, we think about using data to drive decisions and using data from all those devices to change and help us make decisions.


This is the Cal Pacific Medical Center up in San Francisco. The purple arrow on the left points to the door of the emergency entrance.

Cal Pacific is at the end of that big red arrow on the next photo. On that map there’s also a blue line which is my effort to add some social commentary. To the top left of that blue line in San Francisco is where the rich people live, and on the bottom right is where the poor people live. Cal Pacific is right in the middle of the rich side of town, and it’s where San Francisco’s yuppies go to have their babies.
Last year, on August 26, 2014 at about 1 am to be precise, I drove into this entrance rather fast. My wife was next to me and within an hour, we were upstairs and out came Aero. He’s named Aero because his big sister was reading a book about Frankie the Frog who wanted to fly and he was very aerodynamic. So when said, “What should we call your little brother?” She said, “I want to call him Aerodynamic.” We said, “OK, if he comes out fast we’ll call him the aerodynamic flying baby.” So he’s called Aero for short.

Thus began the Quest for Intra-Aero-Bili-ty –a title I hope will grow on you. The Bili part will become obvious in a paragraph or two.

Something had changed since we had been at Cal Pacific three years earlier for the birth of Coco, our first child.

If you look carefully at the top of Amanda’s head, there’s now a computer system. Like most big provider systems, Sutter–Cal Pacific’s parent company–has installed Epic and it’s in every room or on a COW (cart on wheels). Essentially we have spent the last few years putting EMRs in all hospitals. This is the result of the $24+ billion the US taxpayer (well, the Chinese taxpayer to be more accurate) has spent since the 2010 rollout of the HITECH act.While we were there all the nurses, all the doctors, everyone, were busy putting information in the computer system. Now they weren’t universally happy. Many of them were complaining about having to use Epic, about having to fill out a lot of dropdown menus, and several times the Imprivata auto-login tool didn’t work, so they had to re-login. In fact, one nurse told me,“The problem with this hospital is we always put in the cheapest system.” I said, “I don’t think you quite understand how Epic’s pricing works.”

Anyway, after two days, the pediatrician signed us out and we went home. While the clinicians may have been moaning, I was happy because Coco, the big sister in this picture, is already in the Epic System, and I want my kids lifetime medical records available.

Coco’s pediatrician is at the Bayview Children’s Health Center, also part of Sutter, which was set up by a great, increasingly famous pediatrician called Nadine Burke, who gave a wonderful TEDMED talk last year.
Nadine and her espousing of the issues raised in the ACEs study is on the jacket I often wear at conferences painted by Regina Holliday. The Children’s Health Center is in the poorer part of town and we’re one of the few families to go there who have good insurance.
But because it’s part of Sutter like Cal Pacific it’s on the Epic system, and after some agitation on my part I got to see Coco’s records using the MyHealthOnline portal.

I actually get to see a good part of Coco’s records. You can see really detailed information. For example, let’s say, you were a mother who left your baby in the care of her dad on the bed when the baby had just learned to crawl.
Using this system you can actually see the the radiology report from the X-Rays she had after she fell off the bed and hit her head on the floor. It doesn’t happen to have a corresponding note about what you said to the dad who’d gone back to sleep and let the baby crawl off the bed. So if you’re keen on making sure your kid’s lifetime medical information is available to them–as you should be–this is a good way to start.

So a couple of days later, we want to have that first post-pediatric visit and I call the BayView Childrens Health Center and get their answering service. I say ”Can we have an appointment?” They say, “Sorry. It’s the week before Labor Day, we’re off,” and I go, “Why are they off?”
I realized, of course like the rest of San Francisco they’re all at Burning Man.

The answering service finds me another pediatrician, also in the Sutter System. We got an appointment.
It’s now Friday and we visit the new office and my wife Amanda of course fills out the clipboard. We go in to meet the pediatrician and 4 day old Aero gets checked out and there’s a bit of a problem involving this machine, the spectrometer.
What it does is test the baby’s bilirubin level, which is a proxy for jaundice. Most babies get jaundice, which is related to the liver taking time to start functioning. They usually get over it when they start drinking and pooping, but in rare cases, jaundice can be very, very serious. If the bilirubin level gets too high, the liver function closes down and really bad things like kernicterus or mental retardation can happen. So you want to be very careful with babies and their bilirubin level.

The spectrometer test on his forehead says 15.9. That’s not a good number. The pediatrician digs out her iPhone and tries to download an app called BiliTool. She can’t download it but I’ve got my Android phone.
I get connection to the BilliTool website app and plug in the 15.9, plug in the age of the infant, and it recommends that a follow-up is required within 48 hours. Note that neither the EMR, the spectrometer nor the app talked to each other. The data created digitally in the spectrometer was hand typed into the EMR, and then hand typed again into the analysis tool.
On the way out, we get given a printout of our Epic record which we’re supposed to take to the new appointment.

So we need that appointment and of course, because it’s a Friday in 48 hours it’s Sunday, and this pediatrician is closed and my regular one is at Burning Man. So what did we do? Well, the good news is that there’s a Pediatric Weekend and Evening Referral Center in San Francisco so we call to make an appointment there. On Sunday morning, we go over.
There’s Amanda filling in the clipboard at the new appointment on the Sunday morning.
I’m thinking it’s ok because they have the Epic System there too and they must be connected because it’s in the same building (the red arrow in the picture above) which we just checked out of four days before.
But instead, after we fill out the clipboard we go into an exam room and the computer screen is somewhat suspiciously backed up against the wall.

Now the referral clinic pediatrician comes in carrying a pen and a blank piece of paper. She starts saying, “Okay. Now tell me about the kid. Why are you here. When was he born? What was his bilirubin level?” Of course we’ve left that paper printout that we were given at home. I say “Well, I’m a bit concerned because the bilirubin level was 15.9, and Amanda stops me and says, no it was 14.9.” That’s actually a big difference. We apparently can’t look it up and the whole time that computer stays against the wall, and the pediatrician is writing it down on paper.

All right. She says, “What you need to do because you don’t know the real number is to is get a blood draw. Don’t worry. Go down the street to the other facility of Cal Pacific which is just a few blocks away”.
So we go down the street into this facility and I’m holding the referral slip she just gave me. I see that the lab is on the second floor. As we walk past the front desk, they said, “Do you want to register?” I said, “No, we have a referral to the lab.” We walked up to the lab. The lab of course says, “You haven’t registered.” So I then have to go back downstairs and register again.
Some guy takes my name and then hands me another clipboard.

I write up the information. He gives me some stickers with barcodes on them and I get back upstairs. The baby gets his blood drawn. The tech put the stickers on the bottles and then later that night, the great news is that the pediatrician calls and says, “I got the test back. It’s back down in the 14 range. and not going up. It’s pretty good, but you need to go and see your doctor as soon as you can in next couple of days to check out the bilirubin level again.”

So we’ve had demographic data not transferring between sites, clinical data not transferring from diagnostic machines into the record, and lab tests not triggering analysis automatically. All in one provider system with the same EMR.

But overall it’s going to be fine because now we’re going to be back into the Sutter system with our regular doctor, the same one that Coco has. We’re heading over there on Weds morning (I sort of bullied them into an appointment, as they were trying to put me off for another week).
On the way there, I stopped for coffee at this place called Specialty’s which has these amazing, amazing cookies. When you go there, you can run your credit card through the iPad and it will show you what you bought last time and also it will suggest what you might buy now. You order your food, it emails you a receipt and you tell it which pager you picked up and it’ll actually tell you when your food is ready and to come up to the counter–which is the first time a Specialty’s employee needs to talk to you, to hand you the bag. All that for a $3 cookie and a $4 cup of coffee. By the way the cookies are worth the $3, even if they are creating more work for cardiologists in the future.

But we’re not that close to this customer service nirvana in health care.
We next get to the Bayview Childrens’ Health Center, which is part of Sutter Health (and where Nadine Burke’s new Center for Youth Wellness is).
We go upstairs and as it’s Aero’s first visit, Amanda fills in yet another clipboard. Then we go down the hall to the exam room and I took a good look at the computer.
If you get right up close at that top left red arrow, it doesn’t say Epic, it says NextGen. On the bottom right arrow, it says South of Market Healthcare. Now I’m a little bit suspicious about this. Where are those records from the rest of Sutter? Well none of the data from Epic from that recent activity is in this NextGen System because the clinic was not off at Burning Man, they were taking a week off to move. It’s no longer part of the Sutter system, it’s now affiliated with a Federally Qualified Health Care Center called the South Market Health Care.

Aero has been discharged from inpatient, had two outpatient visits, and the spectrometer tests and a lab test. This information is on a random printout and in his parents’ head.
So I get out Aero’s Epic printout and I literally held it up to the screen and took a photo. That’s the state of the art in Intr-Aero-Bili-Ty.

But of course, Aero still needs his bilirubin taken. He gets his test taken using the spectrometer and the good news is that it’s heading down below 12 and he’s getting better.

But then it has to be put in the machine. And now we see the actual real user experience.

This is a video of the nurse having taking the test trying to get the pointing part of the cursor placed in the correct part of the screen. She has to fill that data in manually because the spectrometer doesn’t talk to the record. You can see she has some issues with the mouse. Eventually she’s be able to click it in there but only just and it takes her a while.

So in terms of usability and the user interface, we’re not quite there yet. But this is state of play, almost state of the art in 2014, eight years after we started doing Health 2.0.

Now, our doctor comes in. Dr. Zea Malawa, who is a wonderful pediatrician, dedicated to her patients in one of the poorest parts of the Bay Area. She of course has learned Epic and she’s complaining about having to move to NextGen–in fact she was the only clinician I met who said she liked Epic!

Like her nurse she was having trouble with the mouse. I said, “Sometimes you can put it on your skin, it works better there.”
Don’t forget as a nation, we spent about $500,000 putting her through residency and we spent $24 billion putting in electronic medical records. And the result is that a brilliant young pediatrician is holding the mouse on her hand to try and make her data entry work.

But of course, this change didn’t happen in a vacuum. Then I said to Dr Malawa, “Why did you move?” “Well, we’re in the Sutter System but we’re a very badly off clinic. Most of our patients have Medi-Cal and we don’t receive a lot of money. It’s a better deal for the organization because if we’re in the Federally Qualified Health Center, we get Federal funding as oppose to Sutter having to subsidize us”. I said, “But I thought Sutter was a big rich system which was interested in subsidizing care for the poor.” She said, “Well you know, I think they’ve already got their deal.”

Then I remembered this hole in the ground that I took a photo of which happened to be next to one of Amanda’s ultrasound appointments.
This hole is going to be become the new Cathedral Hill Cal Pacific Medical Center in San Francisco. There was a big political battle about getting this new building approved and Sutter made a lot of promises about things it was doing for the disadvantaged areas of San Francisco in return for permission to build the new hospital. There were questions about to whether those commitments were going to be kept. Now they’ve got the deal through and perhaps because of that the BayView’s Children’s Health Center had to move. At Health 2.0 we ask, “how are we covering the underserved and are we doing it with the same systems?” Honestly, in terms of computer systems right now, we’re not.

Aero and Coco now have records in two separate but equal computer systems, and as far as I can tell not only do they not talk to each other, but there is no way I as the patient can see into the NextGen system.

So, what’s my conclusion? We talk a lot about data coming from the data utility layer and the health interface layer with all its devices creating more data. I can really taste it. Every year at Health 2.0 and of course in my day-to-day life at work, I see so much health technology that should make these problems obsolete

But when I see it from the point of view of patient, we’re just not there yet. It was only in 2015 that Sutter added the ability to download (rather than just view) Coco’s record. And we’re not even to the point where there is a Blue Button in Coco’s record as a symbol that it can be easily downloaded. Kaiser, the VA and many other systems have rolled it out and there you can not only view the record but download it and put it into other applications.

But many are not there yet and I don’t know when Aero’s record at the BayView Child Health Center is going to be downloadable. So right now I can’t download or even see the the record in which all his well baby visits and immunizations are actually being recorded. I know it’s a thankless task but all of us need to be pushing for that data availability.

Because in that one patient’s case Intra-Aero-Bili-ty is pretty damn important.

4 replies »

  1. Well. these practices do exist, but they are vanishing into vast medical conglomerates like Sutter who CLAIM to be co-ordinating care and improving quality. It’s mostly rhetoric. . .

    The reality is that stories like Matt’s happen all the time. I think we need effective, personal small scale primary practices and payment policies that enable them to continue to exist.

  2. Nightmarish.

    But you don’t need a “system” to properly care for an infant with hyperbilirubinemia. How about a well-run independent practice with three or four docs, a staff that knows why you and your child are coming in and has obtained all hospital records needed, Saturday and Sunday hours, in-house lab services? All your child’s records are kept in one place (maybe even on paper!) and you’re given hard copies of everything for your file.

    Practices like that do exist.

  3. May I be struck by lightning for saying this, but you would have had a markedly different and probably safer experience with Kaiser. Despite its thirty year efforts, Sutter is not yet a “system” in the same sense that Kaiser is, and the IT fragmentation you describe is the acid test. Sutter is still a conglomerate.

    Adorable child!

  4. Incredible story, Matthew.

    So here’s where I am lost – the ONC painstakingly created an MU framework and spent tens of billions of taxpayer money to encourage EMR adoption – and now they are struggling with how to get the systems to talk.

    What we have here is full regulatory capture. Cerner and Epic have strengthened their hands due to MU – their combined revenues nearly tripled in 5 years.

    The major health systems have consolidated so much that they are byzantine complexes unable to have one hand talk to the other – and they want moats to prevent patients from getting out (they call that “leakage”)

    So Aero – and all of us all held hostage. ONC can keep putting out reports calling for interoperability but nothing will happen. Health systems have no incentive to make things better.

    And outside of the e-patient movement (which I can count on one or two hands), no patients seem to understand or care about this problem.

    The game is over for years on this front. The vendors and systems won. We all lost.

    ONC should be ashamed. If that’s all 10 years of rule-making got us, then I have lost any faith I had left in the power of government (yes, I did have faith)