By MATTHEW HOLT

I am dipping into two rumbling controversies that probably only data nerds and chronic care management nerds care about, but as ever they reveal quite a bit about who has power and how the truth can get obfuscated in American health care. 

This piece is about the data nerds but hopefully will help non-nerds understand why this matters. (You’ll have to wait for the one about diabetes & chronic care).

Think about data as a precious resource that drives economies, and then you’ll understand why there’s conflict.

A little history. Back in 1996 a law was passed that was supposed to make it easy to move your health insurance from employer to employer. It was called HIPAA (the first 3 letters stand for Health Insurance Portability–you didn’t know that, did you!). And no it didn’t help make insurance portable.

The “Accountability” (the 1st A, the second one stands for “Act”) part was basically a bunch of admin simplification standards for electronic forms insurers had been asking for. A bunch of privacy legislation got jammed in there too. One part of the “privacy” idea was that you, the patient, were supposed to be able to get a copy of your health data when you asked. As Regina Holliday pointed out in her art and story (73 cents), decades later you couldn’t.

Meanwhile, over the last 30 years America’s venerable community and parochial hospitals merged into large health systems, mostly to be able to stick it to insurers and employers on price. Blake Madden put out a chart of 91 health systems with more than $1bn in revenue this week and there are about 22 with over $10bn in revenue and a bunch more above $5bn. You don’t need me to remind you that many of those systems are guilty with extreme prejudice of monopolistic price gouging, screwing over their clinicians, suing poor people, managing huge hedge funds, and paying dozens of executives like they’re playing for the soon to be ex-Oakland A’s. A few got LA Dodgers’ style money. More than 15 years since Regina picked up her paintbrush to complain about her husband Fred’s treatment and the lack of access to his records, suffice it to say that many big health systems don’t engender much in the way of trust. 

Meanwhile almost all of those systems, which already get 55-65% of their revenue from the taxpayer, received additional huge public subsidies to install electronic medical records which both pissed off their physicians and made several EMR vendors rich. One vendor, Epic Systems, became so wealthy that it has an office complex modeled after a theme park, including an 11,000 seat underground theater that looks like something from a 70’s sci-fi movie. Epic has also been criticized for monopolistic practices and related behavior, in particular limiting what its ex-employees could do and what its users could publicly complain about. Fortune’s Seth Joseph has been hammering away at them, to little avail as its software now manages 45%+ of all encounters with that number still increasing. (Northwell, Intermountain & UPMC are three huge health systems that recently tossed previous vendors to get on Epic).

Meanwhile some regulations did get passed about what was required from those who got those huge public subsidies and they have actually had some effect. The money from the 2009 HITECH act was spent mostly in the 2011-14 period and by the mid teens most hospitals and doctors had EMRs. There was a lot of talk about data exchange between providers but not much action. However, there were three major national networks set up, one mostly working with Epic and its clients called Carequality. Epic meanwhile had pretty successfully set up a client to client exchange called Care Everywhere (remember that).

Then, mostly driven by Joe Biden when he was VP, in 2016 Congress passed the 21st Century Cures Act which among many other things basically said that providers had to make data available in a modern format (i.e. via API). ONC, the bit of HHS that manages this stuff, eventually came up with some regulations and by the early 2020’s data access became real across a series of national networks. However, the access was restricted to data needed for “treatment” even though the law promised several other reasons to get health data.

As you might guess, a bunch of things then happened. First a series of VC-backed tech companies got created that basically extract data from hospital APIs in part via those national networks. These are commonly called “on-ramp” companies. Second, a bunch of companies started trying to use that data for a number of purposes, most ostensibly to deliver services to patients and play with their data outside those 91 big hospital systems.

Which brings us to the last couple of weeks. It became publicly known among the health data nerd crowd that one of the onramp companies, Particle Health, had been cut off from the Carequality Network and thus couldn’t provide its clients with data.

The supposed reason was that they were getting data without a “treatment” reason.

Now if you really want to understand all this in detail, go read Brendan Keeler’s excellent piece “Epic v Particle”. Basically Particle cried foul and unusually both Michael Marchant, a UC Davis Health employee & the Chair of the big health systems on the ”Care Everywhere Committee” (remember that from earlier?) and then Epic itself responded. Particle’s founder Troy Bannister in a linkedin post and an official release from Particle said that they had not received notice or any evidence of what they’d done wrong. Michael said they had. I started quoting the Dire Straits line “two men say they’re Jesus, one of them must be wrong.” (FD. Troy was briefly an intern at Health 2.0 long, long ago).

Then Epic publicly released a letter to its clients explaining that, contrary to what Troy & Particle said, it had been discussing this with Particle for months and had had several meetings before and after it cut them off. So unless Particle’s legal counsel was parsing its words very very carefully, they knew Epic and its clients were unhappy, and it was unlikely Troy was Jesus. Michael might still be, of course. (Update: as of 4/15/23 Particle says only some feeds were cut off not all of them as Epic suggested)

In the letter Epic named 4 companies who were using Particle’s data in a way it didn’t like– Reveleer and MDPortals (who are one not two companies as they merged in 2023 before this issue started), Novellia and Integritort. 

So what do they do with the data. Reveleer says that “leveraging our AI-enabled platform with NLP and MDPortals’ sophisticated interoperability allows us to deliver providers a pre-encounter clinical summary of patients within their EHR workflow at the point of care.” Sounds like treatment to me. But Reveleer also does analysis for health plans. You can see why hospitals might not like them.

Novellia is a PHR company, presumably using “treatment” to enable consumers to access their data to manage their own care. This was EXACTLY what Joe Biden wanted the 21st  Century Cures Act to give patients the right to do and what Epic CEO Judy Faulkner told him he shouldn’t want (depending exactly who you believe about that conversation). But it’s probably not a particular “treatment” under HIPAA, because who believes patients can treat themselves or need to know about their own data anyway? (I’ll just lock you all in a room with Dave deBronkart, Susannah Fox and Regina Holliday if you want the real answer). This is apparently the line where ONC folded in its ruling to the vested interests that providers (and their EMR vendors) didn’t have to provide data to patient requests.

Finally, Integritort does sound like it’s looking for records so it (or its law firm customers) can sue someone for bad treatment (or as it turns out defend them for it). Is that “treatment” under the HIPAA definition?  Almost certainly not. On the other hand, do the providers cutting them off have a vested interest in making sure no outside expert can review what they’ve been up to? I think we all know the answer to that question. 

But anyway it looks like Particle switched off Integritort’s access to Carequality on March 22nd before Particle was entirely switched off by Carequality sometime around April 1.

What is not answered in the letter is why, if Carequality can identify who these records are going to, it needed to switch all Particle’s access off. Additionally, you would think that Particle’s path of least resistance would be to cut off the named clients Epic/Carequality was concerned about and try to sort through things while keeping its system running–which it seems it did with Integritort. Whatever happened, instead of this negotiation continuing behind the scenes, we all got to witness a major power play–with clearly Epic & its big customers winning for now.

I think most people who are interested in getting access to data for patients are all agreed on the need for new “paths” which were already defined in the regulations but not implemented, and also presumably for agreed standards (with associated liability) of “know your customer laws” for the onramps like Particle to make sure that the clients using them are doing the right things vis a vis confirming patient identity et al. 

Slight digression: I am confused about why identity proofing is such a big deal. In recent weeks I have had to prove my identity for the IRS, for a credit union, and for the TSA. Not to mention for lots of other websites. There are companies like IDme, Clear and many others that do exactly this. I don’t see anything so specific about health care that is different from credit cards, bank accounts, airport safety, etc. Why can those agencies/organizations access all that data online but for some reason it’s a bridge too far for health care?

However you can see where the fault lines are being drawn. There are a lot of organizations, many backed by rich VCs or huge quasi-tech corporations, that think they can do a much better job of caring for Americans than the current incumbents do. (Whether they can or not is another matter, but remember we are spending 18% of GDP when everyone else spends 10-12%). Those organizations, which include huge health plans, tech cos, retail clinics, startup virtual care clinics, and a whole lot more, need data. Not everything they or the intermediaries they do will fit the “treatment” definition the current holders of that data want to use. On the other hand, the current incumbents and their vendors are extremely uninterested in any changes to their business model.

Data may be the new oil but, like oil, data needs refining to power economies and power health care services. We spent much of the last century fighting about access to oil, and we’re going to spend a lot of this one fighting about data. Health care will be no exception.

Matthew Holt is the publisher of The Health Care Blog

By MATTHEW HOLT, with OLIVIA DUNN & KIM KRUEGER

Today I’m happy to release an update to some unique data about a pressing problem–the ability of small health tech vendors to access data from the major EMR vendors and integrate their applications into those EMRs. For those of you following along, in 2016 when Health 2.0 first ran this EMR API survey, we confirmed the notion that it’s hard for small health technology companies to integrate with the EMR vendors. Since then the two biggest vendors, Epic & Cerner, have been much more aggressive about supporting third party vendors, with both creating app stores/partnership programs and embracing FHIR & SMART on FHIR.

In 2018, we conducted a follow-up survey to see if these same issues persisted and how much progress has been made. In this report, we break down the results of the 2018 survey and compare them to the results of our 2016 survey. As in 2016, survey response rates weren’t great, but in this year’s survey we asked a lot more questions regarding app store programs, specific resources accessed, troubling contract terms and much more. And if you look at the accompanying slides, we also pulled some juicy quotes.

The key message: In 2016 we said this, The complaint is true: it’s hard for smaller health tech companies to integrate their solutions with big EMR vendors. Most EMR vendors don’t make it easy. But it’s a false picture to say that it’s all the EMR vendors’ fault, and it’s also true that there is great variety not only between the major EMR vendors but also in the experience of different smaller tech companies dealing with the same EMR vendor.

In 2018, things are better but not yet good. A combination of government prodding (partly from ONC implementing the 21^st Century Cures Act, partly in the continued growth of pay for value programs from CMS), fear of Apple/Google/Amazon, genuine internal sentiment changes at least at one vendor (Cerner), and maturity in dealing with smaller applications vendors from three others (Allscripts, Athenahealth, Epic), and the growth of third party integration vendors like Redox and Sansoro, is making it easier for application vendors to integrate with EMRs. But it’s not yet in any way simple. We are a long way from the all-singing, all-dancing, plug-in interoperability we hoped for back in the day. But the survey suggests that we are inching closer. Of course, “inching” may not be the pace some of us were hoping to move at.

All the data is in the embedded slide set below, with much more commentary below the fold.

By MATTHEW HOLT

Another one of my favorites, although this one is much more recent than those published so far–dating back to only March 2015. It was the written version of a talk I gave in September 2014 following the birth of my son Aero on August 26, 2014. So if we are discussing birthdays (and re-posting classics as, yes, it’s still THCB’s 15th birthday week!) we might as well have one that is literally about the confluence of a birthday and the state of health IT, health business, care for the underserved and much more!

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 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.

The nurse having taken the test tired in vain 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. Eventually she was able to click it in there but only just and it took her a long 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.

By MATTHEW HOLT & KIM KRUEGER

TL;DR  Accessing and using APIs from major EMR vendors has proved a real problem in the past — in 2016, Health 2.0 (with support from CHCF) collected the data to prove it. This year, we’re updating the survey and are asking again: how hard is it for smaller tech companies to integrate their solutions with big EMR vendors? Take the survey here.  

In 2016, Health 2.0 conducted a survey of health tech startups on behalf of the California Healthcare Foundation (CHCF) to shed some light on the difficulties around integrating third party applications–mainly from a new generation of health technology companies–into major electronic medical records (EMRs). The data was revealing, and confirmed that much of the anecdotal gossip was true: it is a challenge for smaller health tech companies to integrate their solutions with the major EMR vendors. There is no clear path to integration or data access, fees are sometimes involved, and even without fees, the lengthy process is too complicated and costly for small companies to handle. Of course, the problem of integration and data access is not limited to major EMR vendors. Healthcare providers and other data custodians may well be complicating the process, too.

In 2016, this survey found an incredible diversity of experience across the major EMR vendors (i.e. working with Epic is different than working with athenahealth), as well as an incredible diversity of experience across different tech companies dealing with the same EMR vendor. We want to know more. Now, Health 2.0 is reprising our previous work, looking once again to collect concrete data around this problem. Will the data reinforce what we found in 2016 or will there be some measure of progress in the past few years?

Much has changed since the first version of this survey, including a flurry of activity around Epic and Apple’s Healthkit integration, Cerner’s Ignite initiative, and the Carin Alliance. We want to know if any of that has made an impact for those looking to integrate. If you are a tech company that has experience with these issues, take this survey. Help us understand where we stand.    

The data and commentary collected here will be used to generate a set of slides, charts, and graphs that will be shared on THCB and at Health 2.0 Conferences, and will provide another year of data and much-needed transparency around the issue of integration. Responses will be kept anonymous by Health 2.0

Matthew Holt is Publisher of THCB & Co-Chairman Health 2.0.

Kim Krueger is Research Director at Health 2.0

Judy Faulkner pledges to donate her wealth

Epic founder and CEO Judy Faulkner announces plans to give away 99% of her estimated $2.3 billion wealth to charity. Faulkner joins 136 other individuals and families in the Giving Pledge, which was launched by Warren Buffett and Bill and Melinda Gates to encourage billionaires to give the majority of their wealth to philanthropic causes.

What’s not to like about that? Good to know that if Epic wins the $11 billion bid for the VA’s EHR system, some of the government’s money will eventually trickle back down to charity.

Are EHRs creating disparity in care?

A study from Weill Cornell Medical College looks at “systematic differences” between physicians who participated in the Meaningful Use program and those who did not, noting that the differences “could lead to disparities in care.”

The researchers suggest that providers participating in the MU program may provide higher quality care to their patients as physicians using paper records “have less reliable documentation and weaker communication” between providers and won’t benefit from EHR-enabled quality improvements.

I suspect that physicians relying on paper records would balk at the suggestion that the care they provide is inferior to their more digitally-equipped peers. However, it’s hard not believe that the overall care process would be enhanced if all providers could electronically share critical patient information.

News Flash: Government is wasteful in its spending

The Government Accountability Office releases a report calling for urgent action on federal IT

projects, including those for HHS, DoD, and the VA. The GAO notes that these agencies often made health IT-related investments that are wasteful and fail to meet expectations and often lack project planning, requirements definition, and program oversight and governance.

Is anyone surprised to learn the government spends money wastefully? As for the VA’s $11 billion new EHR system, it’s not too soon to start predicting how much over budget it will be.

New Data on EHR Attestations

Data junkies take note: CMS has updated the Meaningful Use EHR vendor dataset for the month of April 2015. The information lists the providers who have attested to MU and indicates the EHR vendor and product used for attesting.

Epic dominates attestations among ambulatory providers, though Cerner and Meditech best Epic in hospital attestations.

Senate committee discuss HIT issues

Industry stakeholders, including Cerner CEO Neal Patterson, discuss barriers to interoperability, Stage 3 Meaningful Use, and patient access to data in a Senate Health, Education, Labor and Pensions (HELP) Committee hearing.

Participants noted that interoperability issues still plague the industry, leading Senator Patty Murray (D-WA) to recommend that the government do more to set high standards and promote interoperability between systems. Meanwhile several participants lobbied for a Stage 3 MU delay.

Show Me the Money

North Dakota Health Information Network will incorporate eHealth Technologies’ Connect Image Exchange technology into its existing Orion Health Open Platform, giving providers access to medical images.

Wheeling and Dealing

Behavioral change telehealth provider AbilTo raises $12 million in Series C funding led by HLM Venture Partners and Yumin Choi.

Aledade, the ACO software and consulting company founded by Dr. Farzad Mostashari, raises $30 million in Series B funding led by ARCH Venture Partners.

Medsphere, developers of OpenVista EHR, secures a $7.5 million venture loan from Horizon Technology Finance Corporation.

Walgreens, the country’s largest drug store chain, will expand its MDLIVE telehealth platform to 25 states by the end of the year.

Mayo Clinic and Apervita partner to create the first self-service marketplace to turn healthcare measures into executable code so that users can gain more insight into their performance.

New Blood

Kentucky emergency physician and nationally recognized HIT expert Steven Slack takes over as president of the AMA.

Etcetera

eClinicalWorks partners with Surescripts to offer CompletEPA to process electronic prior authorizations.

Market researchers predict the US market for clinical healthcare information technologies will reach $19.7 billion in 2019. The industry spent $14.1 billion in 2013 and almost $15.6 billion in 2014.

Black Book Market Research names Kareo the leading integrated health record and billing software for 2015, based on a responses from 33,000 ambulatory groups and staff.

American Well sues Teledoc, accusing Teledoc of infringing on its intellectual property rights in deploying an online telehealth platform that is allegedly too similar to American Well’s patented technology.

CMS Releases Final Update to ACO Program

CMS releases a final rule updating the Medicare Shared Savings Program, which includes a new higher-risk, higher-reward Track 3 option; streamlines data sharing between CMS and ACOs; and adds a requirement that ACOs applying for the program describe how they will promote the use of health IT to boost care coordination.

Organizations Urge Stage 3 Delay

The AMA and MGMA join the AHA and CHIME in calling for a delay in finalizing Stage 3 Meaningful Use requirements. The current version is largely viewed as too burdensome for providers with the potential to impede the use of health IT to improve quality and efficiency.

Quite simply, Stage 3 will not be successful without provider buy-in. There have been delays before; look for another one

Legislators Consider Adding Mental Health to MU Program

Legislators introduce a bill to make behavioral health and substance abuse treatment professionals eligible for the Meaningful Use program.

Similar bills have been floated in the past, though none have passed. Mental health providers should never have been left out of the MU program and it’s past time to fix this oversight. Facilitating the use of EHR would improve care coordination efforts and enhance patient care. Even though there is currently a lot of negativity around the MU program, it’s time to level the playing field and make funds available for mental health providers.

Alas, I am not optimistic the legislation will pass..

Partners Launches $1.2 Billion Epic Project

Partners Healthcare launches its $1.2 billion Epic system at three hospitals. The system has taken three years to build and the price is double the initial $600 million estimate. Partners will continue the roll-out over the next two years.

CMS to Share More Data

CMS will give private-sector innovators and entrepreneurs access to CMS data, including de-identified Medicare claims. Acting CMS Administrator Andy Slavitt said the move is “aimed directly at shaking up healthcare innovation and setting a new standard for data transparency.”

ICD-10 Testing: Better but Still Not There

A second round of ICD-10 end-to-end testing results in an 88% acceptance rate, up from 81% during January’s testing. The week-long testing included 875 providers and billing companies and 23,138 test claims.

Show Me the Money

New Hampshire’s Dartmouth-Hitchcock Health selects Conifer Health to provide RCM services for its hospital and physicians.

Erlanger Health (TN) announces a $91 million contract with Epic that will add 100 new jobs and increase operational expenses $97 million over the next 10 years.

Wheeling and Dealing

McKesson sells its Care Management business to Comvest Partners and co-investor Mosaic Health Solutions. The business will be renamed AxisPoint Health.

Health system software provider Evolent Health completes a $195 million IPO. Evolent was founded in 2011 by UPMC Health Plan and The Advisory Board Company.

Fitbit announces plans for a $549 million IPO.

New Blood

TeleHealth Services names former SONIFI Health president Gary Kolbeck VP of business development.

NextGen parent company Quality Systems announces the retirement of President/CEO Steven T. Plochocki as of June 30, 2015. He will be succeeded by former CareFusion SVP/GM Rusty Frantz.

AHIMA names former California HHS deputy secretary of health information Pamela Lane VP of government relations.

Etcetera

The American Medical Informatics Association (AMIA) publishes 10 recommendations for improving EHRs by 2020. The recommendations cover five areas including simplify and speed documentation; refocus regulation; increase transparency and streamline certification; and foster innovation.

Kareo announces product integration with DoctorBase, its recently acquired practice marketing and patient engagement solution, giving customers access to an integrated suite of front office tools for finding new patients and engaging current patients.

Accenture researchers predict that FDA-regulated digital health solutions will save more than $100 billion over the next four years. Researchers estimate that devices or software to detect or treat a medical condition created $6 billion in savings in 2014, primarily driven by medication adherence, behavior modifications, and fewer ER visits.

Today THCB is delighted to feature an excerpt from Robert Wachter’s much-talked about new book “The Digital Doctor: Hope, Hype and Harm at the Dawn of Medicine’s Computer Age“ (McGraw Hill, 2015). If you enjoy this piece, be sure have a look at the director’s cut interviews Wachter did for the book with Atul Gawande: “Computers Replacing Doctors“,  and John Halamka: “Black Turtlenecks, Data Fiends & Code.” — John Irvine

That Epic would find itself labeled a monopoly is in itself an extraordinary turn of events. In 2000, after 21 years in business, the company had only 400 employees and 73 clients, and did not appear on a list of the top 20 hospital  EHR vendors. Its big break came in 2003, when the 8 million–member Kaiser Permanente system selected Epic over two far better known competitors, IBM and Cerner. The cost to build Kaiser’s electronic health record: $4 billion.

Today, Epic has 8,100 employees, 315 clients, and yearly revenues of approximately $2 billion. The system is now deployed in 9 of the US News & World Report’s “Top 10” hospitals. In 2014, the company estimated that 173 million people (54 percent of the U.S. population) had at least some medical information in an Epic electronic record.

Epic Founder and CEO Judy Faulkner’s vision, built on several central tenets, has been vindicated many times over. The first principle was that the winning EHR vendor would be the one that solved the most problems for its customers.

While Apple’s App Store has made a modular environment seem feasible and even desirable, most healthcare decision makers want a single product that does everything they need right out of the box (physician notes, nursing notes, drug ordering and dispensing, billing, compliance, and population health) and does those things everywhere, from the newborn nursery to the urology clinic to the ICU.

Said David Bates, chief quality officer at Boston’s Brigham & Women’s Hospital and a national expert in health IT, “If you make a big matrix of all the various things that you want as an organization, Epic covers many more of the boxes than others.” When it was choosing which EHR system to purchase, Partners HealthCare (which includes Brigham, Massachusetts General, and several other Boston-area hospitals and clinics) created just such a matrix, and Epic’s system covered more than 90 percent of the boxes.  The nearest competitor covered just 55 percent. Choosing Epic, said Bates, “was not a close decision.”

Partners’ investment in its new EHR system will total about $1 billion. As Epic often makes clear, only about 15 percent of an organization’s electronic health record investment ends up in Verona. The rest is for training the organization’s own workers, for paying its own IT staff and for outside consultants to help with the implementation.

Second, while Epic’s software has been criticized for its lack of interoperability, most healthcare leaders don’t stay up at night worrying about that. Don’t get me wrong: they care deeply about moving information around; it’s a core rationale for EHRs in the first place. But their definition of “around” is not everywhere. Rather, they want a seamless flow of information around all the buildings they own (within the hospital, between the hospital and their clinics, that sort of thing). They also want interoperability between their system and an outside laboratory they use, their system and Aetna’s claims department, and their system and the local Walgreens.

And they do care—up to a point—about connecting to the patient. But this is where things get nuanced, because the information the hospital CIO wants to make available to the patient is finely calibrated: enough to make the patient happy (scheduling appointments, refilling medications, e-mailing her doctor), but not so much as to risk the franchise. If you come to UCSF for a kidney transplant, it’s good for business if you also get your  shots and primary care from us. If you go to see that famous Sloan Kettering oncologist for a second opinion, the cancer hospital would also like to administer your chemotherapy, even though there is absolutely nothing special about its version of the medication, and you could probably get it cheaper at a clinic down the road.

Just think about it: if a patient can go online and shop around for the cheapest CT scan or colonoscopy (“Hey, Groupon’s offering a $75 MRI at the mall today!”), this creates a problem for the nation’s healthcare Meccas, which count on the profits from these activities to pay the bills.

One way to prevent such shopping around is to be sure the hospital’s IT system doesn’t connect to outsiders that the hospital views as competition. In fact, one technique that hospitals use with their Epic system is to buy it and offer nearby clinics free or subsidized access to it, but only if they admit their patients to that hospital or are otherwise part of its network. Epic implicitly encourages this by not selling its system directly to small practices. A clinic that chooses to stay outside the major medical center’s orbit may find its staff standing at the fax machine when it needs to exchange information with that hospital.”

Third, Faulkner was patient. While other companies were busy merging with one another in order to grow, or futzing around with new product lines, Epic remained confident that, someday, the market for electronic health records would take off. Faulker’s employees focused on building a solid system that would solve more problems, and solve them better, than their competitors’ systems. It worked. Fueled by superior customer ratings and word of mouth, Epic’s client base grew slowly and steadily.

“We were making a healthy profit before HITECH,” said Epic’s president Carl Dvorak, showing me a curve of customer growth from 2000 to 2014. While the graph depicted an unmistakable uptick after 2010, it also illustrated steady year-over-year increases before the federal incentives kicked in.

Point taken. But it is equally true that the EHR business represented a sluggish corner of the healthcare economy before 2010, so nobody but insiders really noticed Epic, or cared very much about it. The signing of the HITECH Act instantly changed that, and Epic was ready—if not for the politics and the attention, then at least for the business. “The reason that Epic got so much of the market is that its product is simply better,” said David Bates. I agree. To frame Epic as somehow having orchestrated HITECH—for its dominance in the past few years to be portrayed, as it sometimes is, as a massive conspiracy launched from the Wisconsin farmlands—is just plain silly. Given its 30-year history of quiet competence, it would also represent a sleeper cell story of, well, epic proportions.

From The Digital Doctor by Robert Wachter, reprinted with permission from McGraw-Hill. Copyright 2015.

Robert Wachter is a professor of medicine at the University of San Francisco, California. 

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.