The Black Liszt

Medicine as a Business: Medical Testing 6: Another Test

When you have a tumor that's supposed to be vanquished by radiation therapy but refuses to go away, you're supposed to check on it periodically to see if it's resumed rapid-growth mode. While experience hasn't made my heart grow fond of MRI's, I reluctantly decided to give it another go, since I still have lumps I shouldn't have..

Here's what happened last time. I'm reluctant to dive into MRI-world again because even simple medical scheduling like for a covid test is a big problem -- but small compared to the nightmare of scheduling something like an MRI. Why don't I just go somewhere else where it's done well? Hah! Fat chance. And even then the burden would be on me to pry what are supposedly MY records from the iron grip of the multiple EMR's of my current system.

This time was an adventure -- a new kind of screw-up!

Scheduling the test

You would like to think that a doctor would keep on top of his/her patients and notify them when they're supposed to do something. Like my vet does for my cat! The rhetoric is that they do. It's possible that some of them do -- though how they manage it when having to spend nearly half their time entering an ever-growing amount of stuff into EMR's that are supposed to make things better is a testament to dedication and likely early burn-out.

The burden was on me to remember to schedule this standard-protocol follow-on test for my cancer. Clearly the big-institution medical center wasn’t up to the job. Neither was my insurance company, which is glad to pepper me with reminders to get my blood pressure tested by a doctor, something I regularly do myself at home. Test for cancer? It’s beyond them. A straightforward workflow software system would handle it all automatically.

I was supposed to get the next test a year after the prior one. I let it slip. No one reached out to me, of course. It's now nearly two years. Sigh.

I reached out via email on Nov 16, because I know calling is pointless. After many interactions on Dec 22 I was told I have an appointment -- ignoring of course my request to make it myself. At least I got it and could arrange things to be there on January 8.

Two days before the appointment I got a brief reminder voicemail and an email. The email didn't happen to mention a time or place. I guess they trusted me to know -- unlike any normal scheduling reminder system. But it did give me a ton of words about covid and safety, and requested that I spend time filling out forms online, which I did. Including uploading my driver's license and insurance card.

Taking the test

I arrived on time. After 45 minutes of claustrophobic rigid motionlessness to assure a good quality MRI while being bombarded by loud noises, the tech stopped things and asked me about my tumor and its location, which is under my shoulder blade. His reply: "We have to stop the MRI test. I'm following the test order, but I just looked at the prior scans and they're different! This order says "shoulder," which means around the joint. What past scans did was scapula, including all the way to near the backbone. This machine can't capture that. We'll have to restart you with the other machine here that can."

There was more conversation, all polite on my side, since the tech took initiative and was saving me from thinking everything was fine and having to come back to get the scan done correctly.

Even better, the facility wasn't busy, and the tech took the initiative to get me scanned at the correct machine. I was delayed by an hour and had extra practice at remaining immobile under aural bombardment, but OK. I warmly thanked both techs for their initiative and flexibility and went on my way.

Simply copying and sending in the same order as before was apparently beyond the esteemed radiation center director and/or his staff. I guess I should have gone elsewhere after the time I was in for an appointment after a scan had been done and he carefully examined … the wrong shoulder blade. And then only changing after the second time I politely mentioned he was on the wrong side.

Seeking the test results

What you're supposed to do is make a follow-up appointment with the director of the radiation oncology center to get your results. As in the past, I want to see the results myself. I have previously made an account on the system's patient access portal to do this. I entered the login information and got told this:

Less than a year after my prior access, they de-activated me. Do banks inactivate accounts for lack of use? How about email accounts? Or anything else? Exactly what horrible consequence is being averted by prompt de-activation? Right.

I read through all the material. Only by downloading a PDF file was I able to get the phone number I had to call, which was the only path back to activation. I called and after much of the usual nonsense I got through to a person who, after learning everything about me except my favorite flavor of ice cream gave me a code to enable me to enter a new miraculously complex password and have access to ... my own data, blankity-blank it!

The Surprise Appointment

Remember when I asked to make my own MRI test appointment so I could be sure it was at a time I could make? And one was made on my behalf? Imagine making a reservation at a restaurant and they TELL YOU when the appointment is that you may have -- because we're nice; after all, we don't have to let you come, so we'll fit you in when it suits us. This is what the MRI appointment was like.

Now, having logged into MyChart -- finally -- I discovered I had an appointment to see the director of radiation oncology! Surprise! When were you going to tell me, guys? I was nice and called the number, wove my way through the phone maze and found someone who claimed he would "tell the director." Not cancel the appointment; tell the director. Is some form of after-school detention coming my way to punish me for this refusal of an appointment? We'll see.

Why are they so insistent in me having an appointment with the director to "go over my results" with me? Simple: they want to be able to generate a claim for a visit.

Trying to get my test results

Given that they made an appointment for me to see the doctor two days after the test, it’s a fair assumption that the test results have been filed. I’ve been on the system’s patient access system and the radiation center’s separate (of course) system every day. They clearly have the results. They refuse to let me have them.

Refusing to provide patients timely access to their test results should be a crime. Why? In the most basic way, they are my property. Suppose I go to a tailor and get measured for a custom suit. I pay for the suit. Then the tailor refuses to give me the suit, and ignores my requests. If you go back to the tailor shop, the tailor says “I don’t deliver the suits. I just take measurements, make a suit, and give it to my team.” How do I get my suit then? “Go to MyTailor.com, sign in and it will be there.” What if it’s not? “Sorry, it’s not under my control.” Is the tailor shop committing a crime, taking money and refusing to deliver what was paid for? Of course! But in the wonderful world of medical business, this is standard practice.

Beyond the crime issue, sometimes those test results are health issues that the patients can be incredibly anxious about! Like me. I’m writing this making liberal use of my right arm and fingers, which the cancer could kill. Could it be worse? Yes. But am I anxious to see those results? You betcha!

All the rhetoric is that patients have the "right" to have full access to their own records. Wonderful modern medical record systems crow about how they support this full access. Lies. Blatant and pernicious. And no one does anything about it! Not only isn't it a scandal, it isn't even news.

Read here about the break-through in hospital EMR electronic data exchange. Read here, here, here and here about prior adventures on the same subject. Summary: Compared to past experiences, this was pretty good!

Getting the pre-auth

I’d kind of like to see the actual pre-auth so I can see the test order, a thing that the insurance company should have denied because it was wrong. I went to their website, which is of course down.

They say I can get what I need from their wonderful app Sydney, but it doesn’t have the information. Of course. Forget it. I have better things to do. I already know that the armies of highly paid IT professionals at Anthem can't build software, so beating a dead horse..

Getting my test results

After finally gaining access to MyMountSinai I log in. Of course the test isn't there. Given that they made an appointment for me to see the doctor two days after the test, I'm pretty sure they have it. They're just taking their sweet time to let me see it. Because patient satisfaction is important to them, you know.

I check the next day. The next. Next. Next. A couple more. I finally email the doctor who ordered the test, politely asking if he would send it to me. A couple days later I got an email from Mount Sinai:

Amazing! The results for "David A. Black" are in! I wonder who that is? A long-lost relative? I'm David B. Black. No wonder matching patient health records is a problem.

I carefully read through the report. Here's the punch line:

"No convincing evidence of progression..." is definitely "appreciated" by me! While I'd much rather that it was gone, sullenly sitting in my body not growing I'll gladly take.

The doctor later responded to my email saying he would forward the test results, which arrived. The substance was the same, but Mt Sinai had gone to the trouble to omit lots of information from the report released to me officially and the one forwarded from their own internal system to me. For example, the name of the doctor who wrote the report. Instead of simply copying the information they have to enable me to access it, they've taken trouble to create software to pick and choose exactly which -- of my possessions! -- they will deign to allow me to have. When they feel like it.

Conclusion

In the overall scheme of things, everything I experienced was small potatoes. I'm healthy and alive. This doesn't come close to being in the ball park of the deaths and serious issues resulting from medical error and the costly, health-harming impact of standard medical practices that have been proven to be wrong, but which the authorities refuse to change because it would mean admitting error.

My experience is nonetheless a good example of the business-as-usual gross inefficiencies of the medical system that drive up costs, cause endless patient trouble and generally make things far worse than they should be. This isn't about exotic new biomedical discoveries. It's about things that should be plain, ordinary common-sense processes and software of the kind widely used in fields like veterinary medicine that should be the standard in human medicine. But aren't. One is tempted to think in terms of self-absorbed heads-in-the-clouds elites, but all I've got is mountains of mountains of anecdotal evidence, no serious, RCT's (random controlled tests, the gold standard of medical studies) in favor of that hypothesis, so I'll just put it aside.

Barriers to Software Innovation: Radiology 2

Value-creating innovations are rarely the result of a bright new A-HA moment, though an individual may have that experience. A shocking number of innovations are completely predictable, partly because they've already been implemented -- but put back in the vast reservoir of ready-to-use innovations, or implemented in some other domain. This fact is one of the most important patterns of software evolution.

Sometimes the innovation is created, proven and fully deployed in production, like the optimization method Linear Programming, which I describe here. In other cases, like this one, the innovation is built as a functioning prototype with the cooperation of major industry players -- but not deployed.

In a prior post I described how I went to the San Francisco bay area in the summer of 1971 to help a couple of my friends implement a system that would generate a radiology report from a marked-up mark-sense form. We got the system working to the point where it could generate a customizable radiologist's report from one of the form types, the one for the hand. Making it work for all the types of reports would have been easy -- we demonstrated working software, and wrote a comprehensive proposal for building the whole system. It was never built.

True to the nature of software evolution, the idea probably pounded on many doors over the years, always ignored. But about 10 years ago, a pioneering radiologist in Cleveland came up with essentially the same idea. Of course, instead of paper mark-sense forms, the radiologist would click on choices on a screen, and would usually look at the medical image on the computer screen. This enabled the further benefit of reducing the work, and letting doctors easily read images that were taken in various physical locations. Tests showed that doctors using the system were much more productive than those who worked in the traditional way. Finally, they decided that mimicking the radiologist's normal writing style was a negative, and that the field would be improved by having all reports follow a similar format, with content expressed in the same order in the same way. This was actually a detail, because the core semantic observations would be recorded and stored in any case, enabling a leap to a new level of data analytics. It also, by the way, made the report generation system much easier to build than the working prototype we had built decades earlier, which enabled easy customization to mimic each radiologist's style of writing.

The founding radiologist was a doctor, of course, and knew little about software. He did his best to get the software written, got funding, and got the system working. Professional management was hired. My VC group made an investment. Many people saw the potential of the system; it was adopted by a famous hospital system in 2015. But in the end, the company was sold off in pieces.

Nearly 50 years after software was first written that was able to produce medical imaging diagnostic reports quickly and reliably while also populating a coded EMR to enable analytics, the system is sitting in the vast reservoir of un-deployed innovations. It can be built. It saves time. It auto-populates an EMR.

Many people have opined on why this particular venture failed to flourish. It's a classic example of the realities of software innovation and evolution. The reasons for failure were inside the company and outside the company. For the inside reasons, let's just say that the work methods of experienced, professional managers in the software development industry lead to consistently expensive, mediocre results. Nonetheless, the software worked and was in wide production use, delivering the advertised benefits. For the outside reasons, let's say that, well, the conditions weren't quite right just yet for such a transformation of the way doctors work to take place.

The conditions that weren't right just yet for this and uncountable other innovations add up to the walls, high and thick, behind which a reservoir of transformative innovation and "new" software awaits favorable conditions. In other words, the reservoir of innovations wait for that magic combination of software builders who actually know how to build software that works, with a business/social nexus that accepts the innovation instead of the standard no-holds-barred resistance.

Corporations promote what they call innovation. They are busily hiring Chief Innovation Officers, creating innovation incubation centers, hanging posters about the wonders of innovation, etc. etc. They continue to believe the standard-issue garbage that innovation needs to be invented fresh and new.

The reality is that there is a vast reservoir of in-old-vations that are proven and frequently deployed in other domains. All that's needed is to select and implement the best ones. HOWEVER, a Chief Innovation Officer is STILL needed -- to perform the necessary function of identifying and breaking down the human and institutional barriers that have prevented the in-old-vations from being deployed, in many cases preventing roll-out for -- literally! -- decades!!

Barriers to Software Innovation: Radiology 1

There is a general impression that software innovation in one of its many forms e.g. “Digital Transformation” is marching ahead full steam. There are courses, consultants, posters hanging in common spaces and newly-created Chief Innovation Officer positions.  What’s new? What’s the latest in software?

The reality is that there are large reservoirs of proven, tested and working software innovations ready to be rolled out, but these riches are kept behind the solid walls of dams, with armies of alert guardians ready to leap in and patch any holes through which these valuable innovations may start leaking into practice. Almost no one is aware of the treasure-trove of proven innovations kept dammed up from being piped to the many places that could benefit from them; even the guardians are rarely fully conscious of what they’re doing.

If anyone really wanted to know what was coming in software, all they would have to do is find the dams and peer into the waters they hold back.  In spite of the mighty dams, it sometimes happens that the software finds its way into practice, normally in a flood that blankets a small neighborhood. Sometimes the flood has been held back for decades. There are cases I know of where an innovation was proven 50 years ago, and is still not close to being rolled out.

The dams are built in many ways with many materials. The raw materials appear to include aspects of human nature: ignorance, sloth, greed -- you know, the usual. The really high, solid dams have broad institutional support, in which “everyone” is fine with things as they are, and won’t so much as give the time of day to an amazing innovation that would change many things for the better – except of course for a key interest group.

Here is one of the examples I personally know about. It was one of my introductions to what innovation is all about, and the sad fact that creating a valuable innovation is generally the easy part – the hard part is usually overcoming the human and institutional barriers to deploying it.

Automating Medical Image Reading and Reporting

When a radiologist gets an X-ray, there are two phases of work. The first is to “read” the X-ray and observe anything non-typical that it shows, anything from a broken bone to a tumor. The second is to generate a report of the findings. Most radiologists, then and now, dictate their findings; then someone transcribes the dictated report and sends it as needed. The details of the report can vary depending on the purpose of the X-ray and the kind of person for whom it’s intended.

There has been technology first tested decades ago that appears to show that software is capable of “reading” an X-ray at least as accurately as a human radiologist. I will ignore that work for now, and focus on what should be the less threatening technology, which is translating the doctor's observations to an appropriate report.

While I was in college, I worked on the early ARPAnet with an amazing group of people, one of whom was an MIT student from the San Francisco area who later went on to fame making major advances in integrated circuits, among other things. The summer after we did most of our ARPAnet work, he got involved with a new initiative to transform the way radiologist reports of X-rays were created. He knew that some of my skills in automated language parsing and generation were relevant, so he invited me out to pitch in. I went.

GE, then and now, was a major maker of medical imaging systems. They were seriously experimenting with ways of enhancing their systems to make it easier for radiologists to produce reports of their findings. They created a set of mark sense forms, of the kind widely used at the time for recording the answers to tests, to enable a radiologist to quickly mark his observations of the part of the body in question. Here is the form for a person's guts:

Here is part of the form for the hand, showing how you can mark your observations:

Here is part of the form for the spine, showing how you can customize the report output as needed:

My friends had gotten most of the system together -- all I had to do was build the software that would create the radiologist's report. Because of uncertainty about radiologist's accepting the results, I had to make the report generator easily customizable, so that the radiologist's typical style of writing was created.

Leaving out the details, in a few weeks I created a domain-specific language resembling a generative grammar and rules engine to do the job -- along with the necessary interpreter, all written in PDP-8 assembler language, which was new to me. My friends wrote a clear and compelling report describing our work and included an example of our working software in it. Here was the sample filled-out form:

And here was part of the report that was generated by the software we wrote from the input of that form:

The software worked! And yes, the date on the report, 1971, is the date we did the work.

A major company, prominent in the field, had taken the initiative to design mark-sense forms, incorporating input from many radiologists. A few college kids, in contact with one of GE's leading partners, created a working prototype of customization report-generating software, along with a proposal to bring the project to production.

Just as a side effect, this project would have done something transformative: capture the diagnostic observations of radiologists into fully coded semantic form. This is a form of electronic medical record (EMR) that still doesn't exist, even today! For all the billions of dollars that have been spent on EMR's, supposedly to capture the data that wil fuel the insights that will improve medical care, a great deal of essential medical observation is still recorded only in un-coded, narrative form -- including medical imaging reports!

The bottom line is that this project never got off the ground. Not because the software couldn't be written, but because ... well, you tell me.

See the next post for the continuation of this sad but typical story.

Medicine as a Business: Medical Testing 4: Getting the Results 2

I've done everything I can to use the Mount Sinai patient access portal to access my test results, without result. (See here for the start of this saga, and here for the previous post.)

Now it's time for desperate measures. I finally take the radical step of picking up the phone and calling for help. Surely the results are there!

Here's what happened.

• I called.
• I was put on hold.
• I explained the situation.
• I was put on hold while the CSR checked something out.
• More questions. More holding. Rinse and repeat several times.
• Hold while I check with my supervisor.
• Rinse and repeat several times.
• Final result: we can't help you, call your doctor and have them help.
• But what can they do that you, the specialist can't??
• They have a number they can call to get help.
  

More than half an hour on the phone, and I get to ask my doctor to call someone who won't be able to help either. And I'm sure my doctor would jump at the chance to fix this problem, since he looooooves the EMR so much!!

Desperate and out of options, I call the doctor's office.

• I got transferred to a 5 minute wait before getting a dial tone.
• I got transferred to voice mail.
• I got transferred to nowhere again.
• Again.

Finally, someone picked up whose voice I recognized -- the office receptionist. I explain the problem, and he tells me that the Mount Sinai Radiation Center uses a different EMR than the rest of Mount Sinai!! Apparently one that doesn't send patient data to MyChart.

He promises to get me into the Radiation Center EMR patient portal AND send me the results. "What's your fax number?" he asks. "Umm, can you send it by email?" Pause... "Sure, I can figure out how to do that. What's your email?" I gave him the information, and five minutes later, I got an email with a PDF document attached. The document had the test results and instructions on how to get into the patient portal.Thank you!

Problem solved! I read the report, and the news was good. The thing that had been growing had stopped growing. But self-sacrificing guy that I am, I didn't stop there. What would have happened had I not persisted in my calling, and connected with a helpful and knowledgeable receptionist? After all, the report was supposed to be in the patient portal.

So I persisted. I decided to get into this special patient portal and finally see that the test results were actually posted there and available to me.

The Radiation-only EMR and patient portal

Leaving out all the details, I followed the procedure and after only a moderately odious amount of work (I had an access code!), I got into the portal:

 

Then I went to the test results, where my report should be:

It's not there, of course. Why am I not surprised?

The test results report should have been in My Mount Sinai Chart. It was not there, as confirmed by multiple levels of customer support people. It should also have been in the Radiation Oncology patient portal. It was not there, as you can see above. Given that an insider was able to access the report quickly and send it to me, the report was certainly in both EMR's. It was in the normal Mt. Sinai EMR, because that's where the doctor who wrote the report put it. It was also in the Radiation Oncology EMR, because that's the EMR of the doctor who requested the test -- and as I learned early in the process, it was easy for people in the radiation center to put orders into the "main" system.

Here's the key point:

Neither of the two EMR's at Mount Sinai that were involved with my test put a copy of it into the relevant patient portal so that I could see it. While I managed to avoid the usual doctor's appointment to find out the results, it's not clear how much time and frustration I saved in the end. Here's what was promised:

What was the reality?

• The test results were not available in MyChart. Is Mt. Sinai management unaware of this? Are they just lying and hoping to avoid embarrassment, as they do with other important "low-level" things? See this for a juicy example, and this for context. Either choice is unacceptable.
• The customer support service, when finally available, was unable to help.
• The original doctor's office was unavailable.
• The SURPRISE! special, different EMR used by my Mount Sinai department also didn't have the report.
• I only got the report because of repeated calling and a chance encounter with a kind receptionist.

Yeah, yeah. I'm computer and math guy, and I know statistics, and I know this is just one example. But can you really imagine that what I went through was a giant, almost-never-happens, tiny blip in a uniform fabric of excellence? Right. Wanna buy a bridge? I've got one real cheap for ya...

The E-mail!

Wait! There's more! After I drafted the saga of getting my greedy hands on the MRI results, something happened.

About a week later I got an email:

WHAT!!?? This test result was supposed to be on the radiation center's portal!

What's more, the only reason I got the email telling me the result was available on the Mount Sinai patient portal was because I was previously a patient and had signed up for it. If I had come into the Radiation Center directly, without having a history at the broader hospital system, I'd still be waiting.

On July 24 I'm told that the result was posted and available to me. A result from a test that was posted to Mount Sinai's system on July 3, 3 weeks earlier. It's a good thing we've got computers -- if it took 3 weeks to make a copy of a short document from one place in the Mount Sinai computer system and store the copy in another place in a related program in the same computer system, imagine how long it would have taken to do it manually! Years, probably!

I'm writing this on July 31, 2018, so by now the result surely will be posted on the patient portal for my doctor, nearly a month after the test was taken, right? Let's check:

Nothing is available. So much for the Radiation Center's patient portal.

Now I'm curious. Is the test really there, even though on the wrong portal? Here's the results list:

Yes, it's there, top of the list.

MyChart also provides a convenient to-do list, things I'm supposed to do, and there's something on the list. Better check it out, even though no one's told me there's something for me to do; this subject is important to me, to put it mildly, and I wouldn't want anything to slip through the cracks. Here's the to-do:

Oops. The MRI that was expected to be taken on June 11, actually taken on July 2 because of my initiative, and posted to the portal on July 24 is listed as a to-do item. The EMR evidently failed to connect the work order with the fact that the work ordered was performed and the results delivered.

This sounds benign, but it's actually scary. Deeply scary. The system doesn't match orders placed with results delivered, which means that orders could hang in space, ignored, with patient-essential work undone, unless a concerned and involved patient tracks it. In my case, there was a concerned and involved, not to mention detailed-oriented patient. What about the normal case? How many important things just hang out on a to-do list, undone, until they are "cleaned up?"

There's more trouble coming. When I glanced at the results, I got the impression things were OK. But when you dive in, ... see the next and final post in this series.

Medicine as a Business: Medical Testing 3: Getting the Results

If you went to the time and trouble of a medical diagnostic procedure, chances are ... you want to know the results. ASAP!

It's a perfectly reasonable desire. In most areas of life, getting the results of something you paid for is pretty easy. If the results are information, most organizations just send it to you -- by snail mail, email, text or whatever you've arranged. For example, think about the crucial tests you take that have so much influence on your schooling and career, things like the SAT, MCATS, LSAT, and professional certification tests. You take the test and they send you the results in a standard way.

Not so in the wonderful world of medicine! In that world, you go to considerable trouble to arrange the test, and once it's been taken ...the fun of getting the results begins!

Getting medical test results

The usual pattern of getting the results from a medical test appears to be based on the assumption that patients are both stupid and illiterate. No way can you just send the results! The patient has to make an appointment with highly qualified medical person, who then patiently explains to the patient what the results were and what they mean. Plus, there's an office visit to be paid for.

We are told, however, that there's a revolution going on with medical record transparency. In this wonderful new world, patients can access their medical records themselves!! The major EMR vendors now support a "patient portal" for making such results available online, and major hospital systems brag about it.

Hmmm, I wonder if that's how I could get my results. Oh, I remember now, Mt. Sinai has a patient portal! I'm even signed up for it! Oh, good, this should be easy...

Getting my results from the Patient Portal

The test was ordered at Mt. Sinai. It was performed at Mt. Sinai. I have a MyChart patient portal account at Mt. Sinai. This should be a piece of cake. I pull up the main screen:

Isn't it nice? The EMR software provider, Epic, has a patient portal module called MyChart, which Mt.Sinai has cleverly called My Mount Sinai Chart. All I have to do is login, and I'll surely be able to access my recent test result, just like they say!

I login. I'll spare you the details, and keep it short: the MRI report is not there.

How is this possible? What happened to "no more waiting for a phone call or letter -- view your results..."??

I have just one thought. Maybe the fact that my original doctor left Mt Sinai and that I signed up for the MRI with a new doctor at Mount Sinai confused the system. Maybe I was signed up under a different identity!?

I poke around on MyChart a bit more. In reality, I visited the Mt. Sinai radiation center 30 times over about a six week period, and had separate consults with the doctor in charge of my radiation at least four times. NONE of these visits are listed. In fact, the last visit recorded was from 2016!

MyChart is still a wonderful program, probably ready, willing and able to show me all my stuff, but probably human error resulted in me being entered as a new person. All I have to do is create a new account, and I'll find all my records.

Signing up for the patient portal account

I'll dive right in. Given how important this is, the portal is probably written to make this effective and efficient. Here goes! I click on set up new account and get to here:

What's this activation code business? I look around and find this:

Odd. "Sign up online?" I thought that's what I was already doing! At least there's something relevant for me to click. I click it and get this:

That's more stuff to enter than I've seen in a while. There's a lot that could be said about this form and how it works, but I'll just point out one unique aspect of it:

When was the last time you had to enter your county? Even better, even if you've already entered the state, you get a list of all the counties in the whole USA!

Once you get to this point in the form, you realize that the creative people who built this software have actually created an obstacle course, a long and challenging one, hoping that most people will drop out from exhaustion long before completing it. And we haven't gotten to the really good stuff yet.

Establishing identity for the patient portal

Apparently it's really, really, REALLY important to make absolutely SURE that only the person themselves signs up for chart access. After filling out the form you see above, I got my identity hammered at:

Next, where have I worked:

A home equity loan:

My bank:

My former home:
Finally, after accurately answered all of these questions, and risking totally awful 100% identity theft if their system is compromised, I get this:

 

At this point, a sensible person would have given up and tried to make an appointment with a doctor, so the doctor can access the results document and essentially read it to me. But convinced as I am of my ability to read documents (egotist that I am), I decided to plunge ahead and try another path to getting the document. The next post continues the story.

Who Owns your Health Data?

You own all the data about yourself, right? It's your blood pressure, your date of birth and your test results, after all.

Forget about owning your data -- just try to get your hands on it! You may think you own it, but the sad fact is that you don't possess it! (Remembering hearing about how possession is nine tenths of the law? It applies here in spades.)

Health systems like to appear to be great folks who really care about you. These days, they all talk about how great their patient information portal (or whatever) is. Hah. Just try to use it!

I've talked about how essential it is to have a personal EMR. I've sarcastically described a big break-through in EMR interchange with details from a personal example. And most recently why portability is essential for the EMR.

I've just had another MRI and want to get my hands on it, so I can see the details. So I went to the hospital system website, and found right on the first page that they offer a patient portal that lets you get your information. Great! Here's what they say:

I took the next step and immediately ran into a bit of a problem:

Hmmm. I wonder which of these my doctor uses? And which one the MRI will be under?

After lots more work, I finally got to the right portal that had my stuff. I dove right in. I found my list of test results:

Hmmm, something is wrong here. There's got to be more than that! And what's that second item, the path report?

The path report, somehow dated both 11/23/2016 and 1/06/2017 is actually a copy of a report that was done at my first hospital, Mount Sinai, shortly after the biopsy procedure on Feb 21, 2014:

Bad data!

The first item is the most recent MRI I had done at Northwell. When you read the report:

You find that Northwell has a prior MRI they did dated 9/14/2016, and two earlier "outside examinations" dated 9/24/15 and 1/22/2015, in other words, MRI's done at some other hospital they choose not to name. But they had those MRI's in their system! They just chose not to show them to me.

Even worse, they admit that they performed a prior MRI themselves on 9/14/2016, and somehow it isn't made available to me, though it was in the system and available to the person who wrote this report less than a month ago.

They've thrown away or (more likely) withheld from me, either maliciously or incompetently or some combination, a report they did and two reports sent to them by Mount Sinai, helped in part by the miraculous digital system I described here.

Well, at least I should be able to go to the Mount Sinai portal and get the two missing MRI's, right? Let's see. Here is the top of the Mount Sinai patient portal test results page:

Score: one out of two. The MRI from 1/22/2015 is available, but Mount Sinai has decided I don't deserve to have the latest one, 9/24/2015. The reason is clear. That is the very MRI that was transferred to Northwell by the amazing digital process I described. When I removed the MRI from Mount Sinai on the DVD, I guess it was no longer there, right? That's how computer data works, right, when you take it from someplace it's no longer in the original place? How can it be???

Just in case, I decided to put in a request to the portal to supply the missing information. I was constructive, polite and provided the facts. Here was the cheerful, non-helpful response:

In other words, not my problem. As though the providers had anything to do with what information in the EMR makes it into the patient portal.

The only possible explanation for all this madness is that the hospitals involved are using some cheap new software written by a bunch of hacks. They can't possibly be using any of the most famous, widely used, expensive enterprise software systems, can they?

Let's see. Here's what you see at Northwell:

And here's what you see at Mount Sinai:

Oops. Two of the premier, widely used, non-cheap vendors. Each of whom is committed to modern, state-of-the-art EMR's with rich portals to enable patients to access their own data. Except on days that end in "y." Or when it's too hot or too cold outside. Or something.

Oh, I know! Their backs must be against the wall, humping to get all those wonderful features into their EMR's so that doctors can spend even more time staring at screens instead of being bothered by patient contact. They must be stretched so thin, they just can't afford to get the work done, and all my sarcasm is just nasty and uninformed!

Let's see. Here's AllScripts:

Lack of money is not the issue at Allscripts. Epic is privately held, so there's no way of knowing their profitability, but by every indication, they're doing just fine. 

I guess it all comes down to the simple fact of who owns the data: possession being 9/10's of the law, the fact that they have it means that we patients can have what we fantasize to be our own data when we are able to pry it out of their cold, dead hands.

 

Healthcare EMR: Why Portability Matters

With all the attention and billions of dollars spent on EMR's (electronic medical records), most people are ignoring a crucial feature lacking from EMR's: portability. This abstract-sounding concept is practical, and could be implemented if the industry leaders deigned to do so. Without portability, EMR's are an incredibly expensive, doctor-dissing burden. Effective EMR portability would directly lead to many of the tremendous advantages in patient service and health that old-style, non-portable, legacy EMR's are incapable of delivering.

What is Portability?

A portable EMR has these key attributes:

• It's yours. You own it. It's not owned by some giant entity, sitting behind the impenetrable walls of a remote data center.
• It's controlled by you, just like you control your email.
• Others can help you update it and you can make it available as you choose.

Having a portable EMR is like having a portable personal computer: something that is so small and light but also powerful that you carry it with you everywhere. It's yours! It's got all your stuff!

More specifically, a portable EMR is an app with all your healthcare data and history stored in it. I've talked about this before.

Of course, just like you don't want to lose your contacts and photos if you break your phone, you wouldn't want to lose your medical records if something went wrong. So it would be backed up to the cloud, and automatically synced to any of your devices. This isn't magic; your email probably works this way.

Sometimes you use an app that asks your permission to access your data, for example your email contacts; if you give permission, the app would read your contacts and do something with them, for example send them an invitation. The portable EMR app would ask your permission when you went to a doctor's office or other medical facility, and if you gave it (why wouldn't you?), the medical people you're visiting would have all your records. No need to arrive early and fill out pages of medical history on paper! Similarly, when you leave, whatever they did would be added to your portable EMR, instead of being locked up tight in the hospital's EMR.

That's portability: a safe, secure, accurate, comprehensive EMR that is yours, that you carry with you, and that you and your providers use to assure you get the best medical care, totally informed of your conditions and history.

Why Portability matters

The value of owning your medical record and carrying it with you resembles the value of owning your money and carrying it with you in a wallet -- it's there for your use when you need it, and you can get others to help you. You can walk into a restaurant you've never seen before and get a meal -- if you've got your wallet with you and can pay for it. Similarly, if something bad happens to you while you're traveling, say, your portable medical record contains all the background information about you a medical provider who has never seen you before would need to give appropriate help.

To give you the best care, your doctor needs comprehensive and accurate information about your current medical situation and your medical history. A mistake or omission in your medical record can lead to anything from not helping to disaster.

Existing, non-portable EMR's have multiple versions of your medical history, versions that are almost always incomplete, inaccurate and inconsistent.

When you start an encounter with a medical professional, you are likely to be asked to fill out an extensive form to present your medical history. Then someone else is likely to repeat the exercise verbally and/or go through your written answers. The older you get, the more history you're likely to have, and the more likely it is you'll something out or simply forget something. The error or omission may not seem important to you, but it may be crucial to dealing with your current medical situation. Key parts of the misinformation will end up in the provider's EMR, making the problem worse.

What if your favorite doctor changes medical systems, or you for any reason need to go to a health system that is not your usual one? Then you're in for one of two equally awful ordeals: (1) start over in the new system as though you just stepped off a spaceship newly arrived from a galaxy long, long away; or (2) get involved in the you-hope-you-never-have-to-do-it-again experience of getting your records transferred. Think I'm exaggerating a wee bit? Put on your sarcasm-protection jacket and wade through my recent experience of doing just this and think again.

Portability leads to other good things

An EMR that supports portability is capable of exporting all the information about you it has in a format that lends itself to easily updating your personal, portable EMR. Similarly, it is capable of importing the information in your EMR, resolving conflicts and redundancies as part of the import. Guess what!? This is exactly what EMR's need to interchange information among themselves! You know, the EMR interchange capability that the government has been trying to ram down vendors' throats to little effect for years now. Building portability into EMR's is the vast majority of the work required to achieve inter-EMR interchange! What an idea!

Vendors, can we have a portable EMR? Please? Pretty please???

Healthcare EMR Interchange Breakthrough!

Two of NYC's largest and most renowned hospital systems have collaborated to produce a true breakthrough in EMR interchange! This is no joke: while at this early stage there are minor physical assists, the data being exchanged is fully electronic! This provides a model that can be replicated everywhere, even by systems that are less resource-rich than New York's finest.

Amazingly, I can't find any press releases or news stories about this game-changing break-through. But I know it's true and the systems are operational, because I've experienced it myself. My prior dissections of this issue here, here, here and here are now rendered obsolete. Read on for the details.

Background

As I've described before, I'm being treated for a kind of cancer at one of the world's best hospitals, Mt. Sinai. I'm getting excellent care and doing well. The doctor who is treating me specializes in my kind of rare disease.

I got a letter saying that my doctor was leaving Mt. Sinai. I found out that he's going to Northwell Health, another large, excellent health system in my area, and I decided to follow him there.

My task was simple: I was already scheduled at Mt. Sinai for an MRI to track my cancer's progress, and with my doctor to assess the results. Everything was covered by my insurance plan. All that had to happen was to shift the appointments and move my records.

That was when I discovered the amazing advances in EMR interchange between the hospitals, even with integration of insurance! I'm so excited about this, I'm tempted to give you all the details. But I'll just give the highlights.

Transferring the MRI appointment

I already had an appointment for an MRI at Mt. Sinai, as ordered by my doctor and pre-authorized by my insurance company. All I had to do was shift it over to Northwell. I can tell you from personal experience that making the shift was easy, because of the amazing electronic integration of the two systems. There were a couple minor bumps in the road, but hey, most everything is amazing. Some highlights of the process:

• I called Mt. Sinai. After a while, I found the person who told me I had to call Northwell.
• I traded phone calls with Northwell, and found that they needed a "script" (prescription) written by a doctor, and they couldn't access the one at Mt. Sinai.
• A couple more phone calls got me the script; only a couple!
• While most people at Northwell were unaware of it, there was a radiology center convenient to me, where, after spending well under a half hour on the phone, I was able to get an appointment!
• It turned out that the insurance pre-authorization couldn't be transferred. So during the course of just one morning, with multiple calls with me and a patient, helpful Northwell employee, I was able to re-get the pre-authorization! Let me stop here and show you this fabulous document I was able to get so quickly and with such little effort:

 

Approved. Yay!

But, nerd that I am, I did read on for "important information." Here's the most important part:

Well, maybe they won't pay it after all. And I won't know until it's too late. Oh, well, we'll hope for the best.

The highlight of transferring the MRI appointment

I've saved the best for last. The Northwell radiology people really wanted the doctor's prescription. I could understand that; if I were a radiologist, I'd want it too. The process was so modern, so electronic (with a couple minor physical steps), it's a real showcase of EMR interchange.

Here are the steps:

• After some real effort, someone at Mt. Sinai wrote a new prescription.
• They put the information into their electronic system, and arranged a UPS pickup. All they had to do was put the prescription in the envelope and get the right information on the cover.
• Fully computerized UPS picked it up and delivered it right to me. Pronto.
• All I had to do was scan in the prescription, and use a convenient SaaS service to send the digital image of the prescription via fully-electronic fax to the number Northwell wanted.
• When received at Northwell, all they had to do was enter the information into their modern, interchange-ready EMR system. Done!

Here is the transport mechanism. I have to show you, otherwise you may not believe me.

We're not done with the wonders.

I've had MRI's of this condition before. Naturally, the radiologists at Northwell wanted the prior scans, so they could see what had changed. All they needed was the images and reports from my prior scans. This was the real test of EMR interchange: could the Mt. Sinai system "talk" with the Northwell system and transfer the information? YES! IT COULD! Of course, this is leading-edge stuff, so there could be a couple minor improvements, but let's focus on the positive here.

Transferring the MRI and report

The process couldn't have been simpler. All I had to do was spend time on the phone with the Mt. Sinai people and before you know it, something arrived at my home. It was a package. If you look on the left of the package, you can see the evidence of a modern web interface having been used to create it:

Inside the package were two things. One was a modern, fully digital copy of my MRI, helpfully labelled.
The second was a direct output of a digital record, containing the analysis.

My job was simple: take them with me to the MRI appointment and hand them to the helpful people at the reception desk. Which I did, and they were happy to get them. In a flash, just a couple hours, the information was loaded into the modern Northwell EMR system. I could hardly believe it. Mostly-electronic transfer of fully electronic data from one EMR to the other!

The glitch in the process

I warned you there were a couple things that needed improvement. The radiologists at Northwell noticed that I had two prior MRI's, and Mt. Sinai had only sent one of them. Oops! Would I please get the other MRI? I guess it was hard for them to get it from Mt. Sinai themselves.

So I called. After a while on the phone, I made it to the records department. Apparently, it's kind of secret, because an upset person demanded to know who had given me her number! But in the end, she transferred me to a person who could help. It was easy -- all I had to do was fill out some forms and pay some money and they would take care of it right away.

The helpful records person gave me the search terms to put into Google to find the form on-line. It was just a couple pages long. Here's part of the beginning:

I guess the form should have had a third page, because he had me squeeze onto the second page the address where the MRI should be sent, and my credit card information to pay the roughly $30 it would cost. I printed it, filled it out, scanned it in and faxed it to him. The same day -- super-fast!

OK, it's a glitch. But I was impressed at how he was able to send the MRI straight to Northwell! Unlike the previous one, which I physically brought myself. Of course, I didn't pay for it, and this one I did, so I guess you get what you pay for...

Conclusion

It's just like I said at the beginning: two modern, innovative health systems are demonstrating how easy and convenient (nearly fully) electronic EMR interchange can be, and how much it improves things. If someone had told me, I would have been skeptical. I may even have resorted to sarcasm in my response. But none of that here -- I know by my own experience that it's true!

 

Healthcare Innovation: How to Achieve EMR Interchange

EMR interchange has been a major goal of the tens of billions of dollars that have been spent to buy and install EMR's. The theory is that making it easy for the next medical provider you see to have access to your complete health record will improve health. It might! But the current methods for achieving integration are not working. Not. Working. It's easy to understand why they will NEVER work, and what can be done to achieve the same result.

Not to be mysterious about it, here's how: forget EMR interchange. It's not working because it's hard and none of the people who build and control EMR's really want it to work. Instead, enable a new generation of personal EMR's. It's literally hundreds of times easier.

My EMR vs. Integrated EMR's

Everything is great if I go to a single integrated hospital system that uses a single EMR. I go from place to place in the hospital complex, and everyone knows who I am, where I've been and what's going on:

No problem.

The problem happens when I go to an office, a clinic and a hospital. They each have EMR's. What all the "experts" think is best, backed by tens of billions of dollars, is for the systems to talk with each other. What I suggest instead is MyEMR app, which gets the latest information from each EMR and uploads everything to the next place I visit. Here's the choice:

They look pretty similar, right? There are three unique lines (data paths) connecting my EMR to each of the places I've visited, and there are three unique lines connecting each of the providers (H-C, H-O and C-O).

When the numbers grow, they start looking not quite so equivalent. Let's look at six distinct EMR's. With My EMR, there are just six possible connections:

But if the six have to interchange with each other, we're up to 15 possible connections.

Hmmm. Not a good trend. What about when the number gets bigger? What if 100 EMR's had to talk with each other? How many unique connections (data paths) would there be then? Here it is:

You may say there aren't that many vendors. But getting two different installations of EMR software from the same vendor to talk is still a lot of work! Not to mention the fact that there are many different versions, configurations and customizations of each piece of software. The real number is likely to be much larger!

Conclusion

Just installing an enterprise EMR tends to be an incredibly expensive, years-long disaster. There's a good reason based on simple arithmetic that many years and tens of billions of dollars have yet to achieve any meaningful amount of interchange between EMR's -- there's a combinatorial explosion. The same arithmetic strongly favors the personal EMR approach.

Incentives also favor the personal EMR as the center point of integration. How eager is one hospital CEO to make it real painless for patients to go to the competitor? Patients, on the other hand, are highly incented to want the data in their hands; not only would it save endless hours filling out paperwork and avoiding yet another history interview with its inevitable misinformation, but it's likely to help their providers avoid errors and keep them healthier. Of course, the vendors and systems have a death-grip on patient data, and really don't want to give it to patients, regardless of what they might say. But at least sending data to personal EMR's is a solvable problem without a combinatorial explosion of work to get it done.

I want a personal EMR!

Healthcare Innovation: Getting Data out of EMR Prison

EMR's have a few problems. Selecting and installing them is too often a multi-year disaster. Getting information from one of them to the other is supposed to be routine, but is in fact a rarity. And the data in them is too often incomplete, inconsistent and/or just plain wrong. How can we get our data out of EMR prison and free it to be fixed up and actually useful?

The position of the EMR prison wardens and guards is clear: you can pry your data from my cold, dead hands.

What we'd like

A personal EMR is the solution to many EMR problems, among them interoperability. If data in my own EMR, corrected and completed by me, were uploaded to a provider's EMR, all the data would be up to date with almost no labor.

What we'd like is to have our personal EMR app log into the provider's EMR, download the data, let us fix it and complete it, and then upload the corrected and completed results. Not too hard.

What we're up against

The great Lords who build and operate the grand and glorious EMR's have their own ideas about letting us dusty peons gain access to our own data. Put simply, they're against it. But they'd rather not say they're against it. In fact, supported by legions of government bureaucrats, they insist that our data is fully available to us. All we need to do is follow a few simple procedures, and it can be ours!

Oh, great! Maybe I am being too cynical here. Maybe there really is a way I can take my data out of prison for a walk in the wild.

I recently accompanied someone close to me for a procedure at what is now called Northwell Health, formerly various other names including North Shore-LIJ.

I got all sorts of documents from them in the course of the interaction, and went through them to find out how I could get my friend's information from the EMR. Here's the main document:

Getting the data

First and foremost, can I get my data? You betcha! It says so right in the very official document I was given:

Hooray! I can get a copy! Uh-oh, I hope this doesn't mean just a paper copy. Let's see:

Okay, I can get an electronic copy. So where's the API? Where does my app plug into the EMR? Let's see:

Oh, no!!!! In writing! Somehow I suspect they don't mean emails are fine. But at least after I go through all the nonsense I guess I get my data. Let's read further:

What do you mean "may deny access"??!! It's my data!! Wait. It gets worse.

Nice. I get a redacted version of my own stuff.  Unless they just feel like giving me a summary. Like what, this? "You came in to the hospital. You were sick. You felt like crap. We worked hard. You felt better, and left." Like that? What can I do to actually get my data? Here's how:

Very comforting! Instead of an API, it's a nightmare, obviously intended so that no one actually ends up with their own data.

Correcting the data

Maybe they're better about correcting the data. I showed elsewhere how crappy the data tends to be, and how paper-reliant even places with fancy EMR's are. You'd think they'd want all the data they have to be correct and complete, so they can do Big Data and get the much-vaunted benefits of the tens-of-billions-of-dollars-worth of EMR's we've bought, right?

I'm tired, so I'm not going to drag this one out. Here's the deal with correcting EMR data:

In other words, NFW.

Bottom line

The conclusion is simple: my data, the data about me and my health, is imprisoned in an EMR. The prison guards say, sure, you can visit, any time. Just submit your request in writing in the proper way, and you'll get your data real quick. Maybe. What if my data is sick and needs healing? Forget it.

They say loud and clear that I have a "right" to my data. But it's clear that they'll do everything in their power to make sure that right is never exercised.

Healthcare Innovation: EMR's and Paper

EMR's are essential. They are going to bring healthcare into the digital age -- finally! Healthcare organizations are spending billions of dollars to implement EMR's, and the government is doing the same.They're preparing the ground for the incredible benefits of Big Data and Cognitive Computing!

There is no doubt that the money is being spent. EMR's are certainly being implemented. Are they working? Eliminating paper? Not so much. One thing they are certainly doing is making doctors spend less time with patients and more time with computer screens.

I could go wild with statistics, but all this got tangible for me when I accompanied a family member to a surgical procedure with a top-flight provider at a first class facility in Manhattan recently.

Here is the notebook of papers that accompanied the patient everywhere:

Some of the papers were computer-generated, but most were not. We spend loads of time fielding questions whose answers had already been entered into various systems -- including the provider's! Various papers whose text had nothing to do with medicine had to be signed -- papers concerning regulators, administrators and lawyers.

I heard the dialog in other booths, with huge amounts of time trying to get information out of the memory of patients and onto paper. Here is a nurse doing her job:

I could see that there were also lots of computers all over the place. Not that it mattered.

It turns out that the medical care was excellent, and the procedure successful. Good news! Would eliminating the paper have made it better? Hard to see. If the medical history had already been available, would it have saved some time? Well, the medical history was all available -- the provider had already gotten everything required and entered it into his own system before agreeing to conduct the procedure! So everything done at the hospital was just a bunch of wasted effort anyway, whether it was on paper or on computer! Could the provider's EMR have transferred the information about the patient to the hospital's EMR for this scheduled procedure? Maybe. But it didn't happen, and we know from government statistics that it rarely does.

Tens of billions of dollars are being spent implementing EMR's so we can experience the wonderful benefits of getting rid of paper. Sounds good, but I suspect that no true science or even engineering has been done here. How do we know things will be better in the gold-plated EMR future? Has anyone done patient outcome studies? How about time utilization studies? Has anyone tried alternatives? After all, EMR's can't possibly be a goal -- who cares about EMR's except EMR vendors? EMR's can only be a means to an end; and the only end worth anything is better patient care at lower cost.

What we know for sure is that we're achieving higher costs by implementing EMR's. We're not eliminating the paper. Too much of the data that ends up in the EMR is crap, and too much is missing or wrong. We're not getting accurate data into a single place. We don't have a clue whether we're making patients healthier as a result; we don't know whether we could make patients healthier by spending the money in a different way. Maybe it's time to apply some fresh thinking here.

I'm computer guy. And a facts kind of person. I know that computers and software can make things better for everyone in medicine. I'm NOT saying we should forget this new-fangled computer thing. I'm saying we could get dramatically better results for a fraction of the money we're spending.

Healthcare Innovation: EMR's and Data Quality

Tens of billions of dollars are being spent to implement EMR's in healthcare. There's still a long way to go. Everyone seems to agree that EMR's will make things better than they were with paper. But it's hard to imagine that things will be better if the data is incomplete, inconsistent, and simply wrong.

The big strategic thinkers and powerful people who push EMR use ignore this issue. I guess it's a detail, beneath them, unworthy of their notice. But for anyone who lives in the world of software, numbers and math, data quality is the foundation on which everything is built. Ever hear of "bad data in, bad data out?" It's true!

I can run some personal tests on this issue because I'm being treated for a kind of cancer at one of the world's best hospitals, Mount Sinai. I'm getting excellent care and doing well. Mount Sinai is completely up to date with EMR's. It's clear from my experience to date that my excellent care has nothing to do with the EMR -- arguably, the good care I'm receiving is in spite of the EMR.

Let's look at some details. I recently waded through the hospital website to access my medical records. If whoever designed the website had tried to make it difficult for patients to access their records, they couldn't have done much better.

I finally managed to get a PDF for an encounter. The document makes clear that the hospital's computer graciously deigned to share information with me, the patient:

The document makes equally clear that information is missing. What information isn't here? We have to guess. What an attitude.

Think of an incredibly unpleasant, arrogant class of professionals. What did you come up with? My guess was lawyer. Even with lawyers, when you fire them and request your files they give them to you, minus snarky notes about how things "may be" missing.

There was a section with my name and address. Also how to communicate with me:

They included the identical number for Home and Mobile. You think the computer could have checked for that? This is one of the fatal flaws of the whole EMR approach: the patient is barred from entering and/or correcting his own data! In a sensible, modern system, I would have received an email or text asking me if this information was correct, and asking me to correct it if it's not. But an Enterprise EMR system with layers of security, bureaucracy, administrators, regulators and lawyers involved? Maybe next century.

Now we get to my meds. Here they are. Notice anything?

You may notice that information is missing from the second drug, losartan. What I noticed is that the dosage is wrong. What I have actually been prescribed is 100 mg tablets. This record is from the encounter with the cardiologist who prescribed the drugs! If it's wrong, anything can be wrong!

In my case, it makes little difference, since I'm on top of things. But not everyone is so fortunate, and this is just the kind of error that could, with a different patient and drug, have awful consequences.

Now let's look at my "social history."

It's wrong too. And I'm not allowed to correct it. If I did use alcohol, it's missing the amounts. But I don't use alcohol. If it were correct, it would be incomplete; but it's incorrect.

Finally, let's look at my plan of care:

An appointment. But that's wrong too! The appointment I actually have is for a diagnostic procedure, not what's written here, and the follow-up with the doctor is just missing.

Bad data wrecks everything

You want benefits from Big Data? Nothing good comes from data that's bad, no matter how big it is.

There is very little data exchange among EMR's, in spite of all the tens of billions of dollars that have been spent. Here is the latest stat from the government:

Do you think that's bad? In principle I think it's bad, until I consider all the inconsistent and incomplete piles of crap data that's sitting out there in EMR's. Then I think of the lack of interchange as being more like keeping the bad data in isolation so it doesn't wreck anything. And who's allowed to fix it? I'm certainly not allowed anywhere near it, even though it's my data.

Conclusion

What's the solution? Make health care providers spend even more time bent over computer screens than they do today, which is already excessive?

The core problem is that our whole approach to hospital, health care and provider automation is rooted in the ancient approach to "enterprise software" that was created in the days of mainframes, and lives on in the incredibly expensive, ponderous and user-hating world of modern healthcare IT. The data will become accurate, complete and high-quality when the systems are built correctly, using modern techniques, and when they interact with all concerned parties -- including patients!! -- to get their jobs done.

Healthcare Innovation: EMR Procurement is Broken

Computers and software get faster and less expensive at a dramatic rate. Healthcare systems implementing computers and software gets slower and more expensive at a dramatic rate. Why is buying the thing getting so much worse at the same time as the thing being bought is getting so much better?

There is only one explanation: the procurement process used by the large organizations is broken. Badly. It doesn’t need “improvement” or “innovation.” Today's standard procurement system needs to be thrown out. We need to start over.

Improving Computers: Incredibly complex, successful

It's just unbelievable how much better, faster, smaller and cheaper computers get. The rate of improvement is unprecedented in human experience. Nothing comes close.

Even software that used to be unavailable or expensive to buy is free! Think "open source," for example.

Procurement of computers: Basically simple, a worsening mess

Most large organizations are just awful at building, acquiring and implementing computer hardware and software. It's not getting better.

How do these organizations respond to their screw-ups? They look closely at what went wrong, "improve" the process ... and make it even worse.

Back to paper

Organizations really try to make it work. The US Coast Guard, for example, embarked on a project to plan the implementation of a leading EMR in 2010, and committed $14 million just to do some planning. Six years later they cancelled it:

They knew something was really wrong, not just the usual wrong stuff. You know things are tough when they go back to paper:

On the other hand, they can provide all the health services their members need with paper alone! Tells you something about today's EMR's, doesn't it?

New York City's HHC EMR procurement

NYC's public hospital system is big. They're also a pioneer in using EMR's. They've won awards because of it, and gotten $200 million from the feds for achieving full "meaningful use" status with it. They go way beyond just electronic recording; they manage diseases, do screening, and lots of advanced things. See this from a January 2013 HHC press release:

By their own report and by the judgment of important institutions, HHC has this EMR thing nailed!

HHC has bigger problems than EMR. It is in big financial trouble, and it's getting worse. See this report from late 2013:

They've got an industry-leading, award-winning, value-enhancing, WORKING EMR, and huge financial troubles. Sounds like an ideal time to buy a new, system-wide EMR, right??!!

Well, that's what they did. In same early 2013 press release in which they bragged about their wonderful existing EMR, quoted above, they announced they were buying a new one:

A close reading of the press release leaves one wondering why they had to have a new one: the touted wonders of the new system line up pretty well with the wonders of their award-winning existing system. I guess they really hankered after that new-EMR smell. And with the big award from the feds, $200M of the $302M is already paid for, leaving just pocket change to pay for it!

But then, less than a month after this press release, HHC issued an RFP for extensive additional services. Here is a list of the consultant skills they wanted to hire:

Strange. I got the distinct impression from reading the press release about getting Epic that the $302 million covered everything. What's this about?

The July 2015 board meeting of HHC had an update on how things were going. Things weren't working out too well on the cost side; those numbers are millions, by the way:

Wow. Just a bit more that $302 million. Digging a little further in the Board minutes, we find a little about the $113 Million. Here's the summary:

Or maybe not -- this $119 million is for consultants, not FTE's, and it's per year -- the surprise on-going cost of getting that shiny-new-EMR-system smell into the hospital! And you have to notice that 20 vendors will be awarded contracts -- because everyone knows that having lots of temporary people from lots of vendors working on a single project is the proven way to maximize coordination and minimize surprises. Sure.

Oh well, at least things are "under control." Or maybe not. Just a month later, in August 2015 we learned:

And the dates? Let's talk about something else, because "full operation by 2017 for all users" is history, along with the $302 million cost and lots of other things for this troubled system.

Conclusion

HHC is a nice, big, fat example -- but it's not unusual. This is what EMR procurement is like, over and over again. The buyers just keep shuffling ahead to the painful and prolonged slaughter, like cattle. Few organizations are as smart as the US Coast Guard, and decide that paper is just fine. Big-organization procurement in general is broken, and EMR procurement in particular is badly broken. Every attempt to "fix" it seems to make it worse. The procurement process needs to be thrown out. We need to start over.

But start over with what? I will summarize how in forthcoming posts. But it's not mysterious. It's just an application of the proven methods described in my books and summarized in various posts on this blog.

I Want an EMR App

I want an EMR app. I want it badly. I want it now. It shouldn’t be that big a deal. Where are all my choices? What’s wrong?

My EMR

Who cares more about my health than I do? Who has more right to hold my medical records than I do? I should have a simple app that contains all my medical and health records, whether generated by me, a doctor’s office or a hospital. I should be able to have that data encrypted and backed up to the cloud, from which I should be able to access it myself or grant access to it by others. It should be easy for me to get the records concerning me from any medical facility I visit – including fancy stuff like MRI’s. It should also be easy to upload my medical records from the past and from other institutions – including the all-important medical history, which is normally handled in such a slap-dash way, too often peppered with errors and omissions.

Access to medical records and banks

Think about banks. They only have my money because I choose to deposit it with them. They provide regular statements, and on-line access to what I’ve got and my transactions. I can withdraw any portion of it whenever I choose. It’s my money, after all – and they’re charging fees.

Now think about a doctor’s office. They only have records about my visit because I choose to go there. I’m paying them for their services, including making tests and keeping records. It’s my data – taken from me with my permission, and paid for by me. How dare they not make every effort to make access to my data be as convenient as possible for me? If a bank made it as hard to withdraw money as hospitals make it to withdraw my own medical records, how long do you think the bank would stay in business? Is sending a bunch of data to my phone really harder than going into a vault and counting out the cash I request? Of course not – they just can’t be bothered!

The medical establishment has it backwards

Today, of course, all my records are scattered about, some in each medical place I’ve visited. They’re stored in different systems that are incompatible. Even software from the same vendor that are installed in different institutions don’t talk with each other! And they certainly don’t talk with me – and if I insist, the best I can get from most of them is a bunch of paper. Uhhh … people … computers have been around for a while now, and there are things called WiFi and the internet that are supposed to make things easier. The people who use them seem to like them. Why don’t you check them out??

Here’s the worst part – the whole medical establishment thinks in terms of them sharing my medical records among themselves. Instead of giving them to me. The patient. Whose records they are. They can think of nothing but, with prodigious effort and great expense, somehow getting all their systems to talk with each other. They can barely keep their own systems working, much less get them to intercommunicate.

Which they can’t do yet. I got an MRI at an office on west 57^th st in Manhattan. I had an appointment with a doctor at a major medical center a few blocks away. I did what I was instructed to do – I walked to the MRI place, waited while they made a DVD of my scan, and then walked to the hospital, gave it to a nurse, and waited while it was loaded in. Years ago, we sneeringly called this “sneaker-net.” Unfortunately, sneaker-net is alive and well in the wonderful world of self-absorbed, stone age medical computing.

EMR vs. My EMR app

The government has already spent nearly $20 billion dollars so far trying to get hospitals to use EMR’s.

A multi-year contract to “upgrade” a military EMR system is worth over $10 billion dollars.

The contract ended up being awarded to Cerner for over $4 billion, at least that's what they're saying now.

These figures are absurd. And after all that money, the systems crash, they’re incompatible with each other, and they’re filled with incorrect and incomplete information.

That’s one big reason why I want my own EMR app, with all my data in it. I can study it and do research at my leisure. I can take it with me. I can complete and correct my history. I can get new providers and their systems up to speed with me and my issues quickly and without the usual labor-intensive paper stuff, replete with errors and omissions. And best of all, it will cost considerably less than a billion dollars.

Conclusion

I’m ready. How about an open source project for it – if it makes sense to build and support linux this way, why not My EMR App? Anyone? But I’ll take it any way I can get it.

Healthcare IT Disfunction: the Secret Computer Outage at Mount Sinai Hospital

When the computers go down in a hospital, patient lives are put at risk. Medical records aren't accessible, care orders can't be entered or received, and the staff runs around trying to make things work as best they can, in spite of the unavailability of the hospital's mission-critical system.

Could anything be worse?

Yes.

The outages aren't tracked. They are hidden -- literally kept secret. After all, reputations are at stake here! If it ever got out that people whose salaries run into the hundreds of thousands of dollars a year for running an operation that spends hundreds of millions of dollars a year can't even keep the computers running, who knows what might happen?

The IT Horror Show at Mount Sinai Hospital

I’ve already told the story of one of my personal experiences with horrible hospital software. Here’s another.

When I arrived at the cancer treatment center at Mount Sinai in New York last Fall, I immediately noticed that things were different than they had been on my prior visits. Patients were anxious, and staff were madly rushing about. Here's the waiting area on a calmer day.

The problem was immediately evident when I checked in: the screen was blank, and everything was being done on paper. This was Wednesday, and the computers had been down since early Monday. Some departments were back up, but since some important ones were still down, lots of things were still being done with phone calls and handwritten notes. Among other comments, I heard “This isn’t the first time this has happened.”

This multi-day outage didn’t take place in Podunk. It was at a premier medical center. Is it better at Mount Sinai than other places? Worse? I have no way of knowing.

This was outrageous. The health and life of patients, the hospital’s primary mission, was compromised, to put it mildly. Everyone was anxious and upset, but no one was shocked. Was anyone fired? Did the CIO lose his job? The CIO deserved to be frog-marched to the nearest exit, along with anyone else involved. But last I heard, the news of the outage was suppressed, as usual, and the CIO and his whole crew continue to be richly employed.

It appears to be a question of priorities. Hospitals and their CIO's issue press releases when they install a new version of the ridiculously expensive enterprise software they use, and move up another rung on the ladder of how heavily dependent your hospital is on its EMR (electronic medical record). Being more dependent on computers is considered to be a good thing in this industry! But simple things like tracking the up time of the system? Apparently it's beneath the level of the top people to pay attention to it -- it nonetheless appears to be important enough to train everyone to hide the outages.

Computer Availability

The more dependent you are on computers, the more important it is that they actually work! The top people in any computer-using organization can be cavalier about system up-time. This isn't just something that happens in healthcare, as I've pointed out. The two most important things about any computer system are that it works and that the performance is reasonable. This is true times a large number for a system that is mission critical for an organization devoted to curing sick people.

Conclusion

Heads should have rolled after the outage that I personally experienced and can personally testify actually happened at Mount Sinai Hospital in New York City. Not only didn't they roll, they continue to crow about how wonderful they and their system are, while making sure to suppress all news and information about their IT malfeasance. To put it mildly: not acceptable.