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Visible and Useful Patient Data in an Era of Interoperability Failure

Posted on October 13, 2017 I Written By

Healthcare as a Human Right. Physician Suicide Loss Survivor. Janae writes about Artificial Intelligence, Virtual Reality, Data Analytics, Engagement and Investing in Healthcare. twitter: @coherencemed

Health record interoperability and patient data is a debated topic in Health IT. Government requirements and business interests create a complex exchange about who should own data and how it should be used and who should profit from patient data. Many find themselves asking what the next steps in innovation are. Patient data, when it is available, is usually not in a format that is visible and useful for patients or providers. The debate about data can distract from progress in making patient data visible and useful.

Improvements in HealthIT will improve outcomes through better data interpretation and visibility. Increasing the utility of health data is a needed step. Visibility of patient data has been a topic of debate since the creation of electronic health records. This was highlighted in a recent exchange between former vice president Joe Biden and Judy Faulkner, CEO of Epic Systems.

Earlier this year at the Cancer Moonshoot, Faulkner expressed her skepticism about the usefulness of allowing patients access to their medical records. Biden replied, asking Faulkner for his personal health data.

Faulkner was quick to retort, questioning why Mr. Biden wanted his records, and reportedly responded “Why do you want your medical records?” There are a thousand pages of which you understand 10.”

My interpretation of her response-“You don’t even know what you are asking. Do not get distracted by the shiny vendor trying to make money from interpreting my company’s data”

As reported in Politico Biden–and really, I think that man can do no wrong, responded, “None of your business.”

In the wake of the Biden Faulkner exchange, the entire internet constituency of Health IT and patient records had an ischemic attack. Since this exchange we’ve gone on to look at interoperability in times of crisis. We’ve had records from Houston and Puerto Rico and natural disasters. The importance of sharing data and the scope of useful data is the same. 

During what I call the beginning of several months of research about the state of interoperability I started reading about the Biden and Faulkner exchange. This was not the first time I had been reading extensively about patient data and if EHR and EMR data is useful. It just reminded me of the frustrations I’ve heard for years about EHR records being useless. Like many of us, I disappeared down the rabbit hole of tweets about electronic health records for a full day. Patient advocates STILL frustrated by the lack of cooperation between EHR and EMR vendors found renewed vigor; they cited valid data. Studies were boldly thrown back and the exchange included some seriously questionable math and a medium level of personal attack.

Everyone was like, Are we STILL on this problem where very little happens and it’s incredibly complex? How? How do we still not have a system that makes patient data more useful? Others were like, Obviously it doesn’t make sense because A) usefulness in care, and B) money.

Some argued that patients just want to get better. Others pointed out that acting like patients were stupid children not only causes a culture of contempt for providers and vendors alike, but also kills patients. Interestingly, Christina Farr CNBC reported that the original exchange may have been more civil than originally interpreted. 

My personal opinion: Biden obviously knew we needed to talk about patient rights, open data, and interoperability more. It has had more coverage since then. I don’t know Faulkner, but it sounds like a lot of people on Twitter don’t feel like she is very cooperative. She sounds like a slightly savage businesswoman, which for me is usually a positive thing. I met Peter from Epic who works with interoperability and population health and genomics and he was delightful.

Undeniably, there is some validity to Judy’s assertion that the data would not be useful to Biden; EHR and EMR data, at least in the format available from the rare cooperative vendors, is not very useful. They are a digital electronic paper record. I am willing to bet Biden–much as I adore the guy–didn’t even offer a jump drive on which to store his data. The potential of EHR data visualization to improve patient outcomes needs more coverage. Let’s not focus on the business motivations of parties that don’t want to share their data, let’s look at potential improvements in data usefulness. 

It was magic because I had just had a conversation about data innovation with Dr. Michael Rothman. An early veteran in the artificial intelligence field, Dr. Rothman worked in data modeling before the AI winter of the 80s and the current resurgence in investment and popularity. He predates the current buzz cycle of blockchain and artificial intelligence everything. With many data scientists frustrated by an abandonment of elegant, simple solutions in favor of venture capital and sexy advertising vaporware, it is timely to look at tools that improve outcomes.

In speaking with Dr. Rothman, I was surprised by the cadence of his voice, he asked me what I knew about the history of artificial intelligence, and I asked him to tell his data story. He started by outlining the theory of statistical modeling and data dump in neural net modeling. His company, PeraHealth, represents part of the solution for making EMR and EHR data useful to clinicians and patients.

The idea that data is going to give you the solution is, in a sense, slightly possible but extremely unlikely. If you look at situations where people have been successful, there is a lot of human ingenuity that goes into selecting and transforming the variables into meaningful forms before building the neural network or deep learning algorithm. Without a framework of understanding, a lot of EHR data is simply a data dump that lacks clinical knowledge or visualization to provide appropriate scaffolding.  You do need ingenuity, and you do need the right data. There are so many problems and complexities with data that innovation and ingenuity is lagging behind with healthIT.

The question is – is the answer you are looking for in the input data? If you have the answer in the data, you will be able to provide insights based on it. Innovation in healthcare predictions and patient records will come from looking at data sets that are actually predictive of health.

Dr. Rothman’s work in healthcare started with a medical error. His mother had valve replacement surgery and came through in good shape. Although initially she was recovering quickly, she started to deteriorate after a few days. And the problem was that the system made it difficult to see.  Each day she was evaluated.  Each day her condition was viewed as reasonable given her surgery and age.  What they couldn’t see was that each day she was getting worse.  They couldn’t see the trend.  She was discharged and returned to the ED 4-days later and died.

As a scientist, he recognized that the hospital staff didn’t have everything they needed to avoid an error like this. He approached the hospital CEO and asked for permission to help them solve the problem. Dr. Rothman explained, I didn’t feel that the doctors had given poor medical care, this was a failure of the system.

The hospital CEO did something remarkable. They shared their data. In a safe system they allowed an expert in data science to come in to see what he could find in their patient records, rather than telling him he probably wouldn’t understand the printout. The hospital was an early adopter of EHR records, so they were able to look at a long history of data to find what was being missed. Using vital signs, lab tests, and importantly, an overlooked source of data, nursing notes, Dr. Rothman (and his brother) found a way to synthesize a unified score, a single number which captures the overall condition of the patient, a single number which was fed from the EMR and WOULD show a trend.  There is an answer if you include the right data.  

Doctors and nurses look at a myriad of data and synthesize it, to reach an understanding.  Judy is right that a layman looking at random pieces of data will not likely gain much understanding, BUT they may.  And with more help they might.  Certainly, they deserve a chance to look.  And certainly, the EMR and EHR companies have an obligation to present the data in some readable form.

Patients should be demanding data, they should be demanding hospitals give them usable care and normalize data based on their personal history to help save their lives.

Based on this experience, Michael and Steven built the Rothman Index, a measure of patient health based on analytics that visualizes data found in EHRs. They went on to found PeraHealth, which enables nursing kiosks to show the line and screens to see if any patients decline. In some health systems, an attending physician can get an alert about patients in danger. The visualization from the record isn’t just a screen by the patient, it is also on the physicians and nurses’ screens and includes warnings. Providers have time to evaluate what is wrong before it is too late. The data in the health record is made visual and can be a tool for providers.

Visualization of Patient Status with the Rothman Index and Perahealth

Is Perahealth everywhere? Not yet. For every innovation and potential improvement there is a period of time where slow adopters wait and invest in sure bets. Just like interoperable data isn’t an actuality in a system that desperately needs it, this is a basic step toward improving patient outcomes. Scaling implementation of an effective data tool is not always clear to hospital CMIO and CEO teams.  The triage of what healthIT solution a healthcare system chooses to implement is complex. Change also requires strong collaborative efforts and clear expectations. Often, even if hospital systems know something provides benefits to patients, they don’t have the correct format to implement the solution. They need a strategy for adoption and a strong motivation. It seems that the strongest motivations are financial and outcomes based. The largest profit savings with the minimum effort usually takes adoption precedent. This should also be aligned with end users- if a nurse uses the system it needs to improve their workflow, not just give them another task.

One of the hospitals that is successfully collaborating to make patient data more useful and visual is Houston Methodist. I spoke to Katherine Walsh, Chief Nursing Officer from Houston Methodist about their journey to use EHR data with Perahealth. She explained it to me- Data is the tool, without great doctors and nurses knowing the danger zone, it doesn’t help. This reminded me of Faulkner’s reaction that not all patient data is useful. Clinical support should be designed around visible data to give better care. Without a plan, data is not actionable. Katherine explained that when nurses could see that the data was useful, they also had to make sure their workflow included timely records. When EHR data is actually being used in the care of patients, suddenly data entry workflow changes. When nurses and doctors can see that their actions are saving lives, they are motivated.
The process to change their workflow and visualize patient data did not happen overnight. In the story of Houston Methodist’s adoption of Perahealth, Walsh said they wanted to make sure they helped doctors and nurses understand what the data meant.  “We put large screens on all the units- you can immediately see the patients that are at risk- it’s aggregated by the highest risk factor.” If you are waiting for someone to pull this data up on their desktop, you are waiting for them to search something. But putting it on the unit where you can see it makes it much easier to round, and makes it much easier to get a sense of what is going on. You can always identify what and who is at risk because it’s on a TV screen. The Houston Methodist team showed great leadership in nursing informatics, improving outcomes and using an internal strategy for implementation.

They normalize the variants for each person- a heart rate of 40 for a runner might be normal- then on the next shift 60 seems normal- then at 80 it also seems normal- you can tell them when you want an alert. To help with motivation, Walsh needed to make the impact of PeraHealth visual. They hung 23 hospital gowns around a room, representing the patients they had saved using the system.
The future of electronic health records will be about creating usable data, not just a data dump of fields. It is transforming EHRs from a cost hemorrhage to a life-saving tool through partnerships. Physicians don’t want another administrative task or another impersonal device. Nurses don’t want to go through meaningless measures and lose track of patients during shift changes. Show them the success they’ve had and let the data help them give great care.

Hospital administrators don’t want another data tool that doesn’t improve patient outcomes but has raised capital on vaporware. Creators don’t want more EHR companies that don’t know how to work with agile partners to create innovation.

The real ingenuity is in understanding – what data do you need? What data do patients need? Who can electronic healthcare record companies partner with to bridge the data divide?

We can bridge the gap of electronic health records that aren’t legible or useful to patients and create tools to save lives. Tools like those from PeraHealth are the result of a collaborative effort to take the data we have and synthesize it and visualize it and let care providers SEE their patients.  This saves lives.

Without this, the data is there, it’s just not usable.

Don’t just give the patients their data, show them their health.

John Glaser to Stay on as Senior VP of Cerner Upon Close of Acquisition

Posted on November 19, 2014 I Written By

John Lynn is the Founder of the blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

In case you’re living under a rock (or more affectionately, you’re too busy working to follow the inside baseball of EHR company acquisition), Cerner is set to acquire Siemens in late winter or early spring pending all the needed approvals for companies this size. Watching the merging of these two companies is going to be very interesting indeed.

Neil Versel just reported that John Glaser, current CEO of Siemens Health Services, has announced that upon close of acquisition he’ll be joining the Cerner team as a Senior VP. I also love that John Glaser made this announcement on the Cerner blog.

I think this is a big deal since I believe John Glaser is at the point in his career that he could do just about anything (or nothing) if that’s what he desired. The few times I’ve interacted with John Glaser, he was sincerely interested in moving healthcare forward through the use of advanced IT. I imagine that’s what’s motivating him to stay with Cerner. No doubt, Cerner is sitting on a huge opportunity.

In John Glaser’s blog post, he provided an interesting insight into Neal Patterson’s comments at the Cerner user conference:

In his CHC keynote address, Cerner CEO Neal Patterson did a masterful job of conveying Cerner’s commitment to patient-centered care. Before he spoke, a patient and her nurse were introduced with explanation that the woman’s life was saved by a Cerner sepsis alerting system. Neal then shared the incredible challenges he and his wife have faced in her battle with cancer because of limited interoperability.

Neal’s keynote was very personal – about how we can make a loved one’s care journey easier by ensuring that all records – every detail – are available electronically and accurately wherever the patient receives care. It was the case for interoperability but also the case for making a patient’s life easier and the care better.

It’s hard for me to say how much of this was theatrics, but I’m glad they are at least talking the right talk. I really do hope that Neal’s personal experience will drive interoperability forward. Neil Versel suggested that interoperability would be John Glaser’s focus at Cerner. I hope he’s successful.

While at CHIME, I talked with Judy Faulkner, CEO of Epic, and we talked briefly about interoperability. At one point in our conversation I asked Judy, “Do you know the opportunity that you have available to you?” She looked at me with a bit of a blank stare (admittedly we were both getting our lunch). I then said, “You are big enough and have enough clout that you (Epic) could set the standard for interoperability and the masses would follow.” I’m not sure she’s processed this opportunity, but it’s a huge one that they have yet to capitalize on for the benefit of healthcare as we know it.

The same opportunity is available for Cerner as well. I really hope that both companies embrace open data, open APIs, and interoperability in a big way. Both have stated their interest in these areas, but I’d like to see a little less talk…a lot more action. They’re both well positioned to be able to make interoperability a reality. They just need to understand what that really means and go to work on it.

I’m hopeful that both companies are making progress on this. Having John Glaser focused on it should help that as well. The key will be that both companies have to realize that interoperability is what’s best for healthcare in general and in the end that will be what’s best for their customers as well.

Patient Safety Benefits of EHR, EHR Design, and RIP CCHIT

Posted on November 7, 2014 I Written By

John Lynn is the Founder of the blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

Here’s a quick look at some interesting tweets out their in the healthcare IT and EHR Twitterverse.

I’ve heard this argument from Epic before. There’s certainly an argument to make for improved patient safety on one system. However, that’s likely because our current systems aren’t interoperable. If they were interoperable, then having one massive system wouldn’t be better for patient safety. Considering, the EHR world is going to be a heterogeneous EHR environment, we need to make it so multiple systems isn’t a patient safety issue.

Ouch! I’ve described them as big billing engines, but I think a tool designed for insurance auditors might be more descriptive. Lately there has been a new layer added. EHR is now a tool for meaningful use auditors as well.

CCHIT being gone won’t likely have much impact on healthcare and EHR. They were basically gone for a number of years already. Although, I think their departure is a good thing for healthcare IT and EHR. I’d just still love to see EHR certification disappear as well. EHR certification is not meaningful.

More Epic Interoperability Discussion

Posted on October 7, 2014 I Written By

John Lynn is the Founder of the blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

Looks like Epic is starting to open up and join the conversation about healthcare interoperability. The latest is an article in the New York Times which includes a few comments from Judy Faulkner, CEO of Epic. Here’s the main comments from Judy:

In 2005, when it became clear to her [Judy] that the government was not prepared to create a set of rules around interoperability, Ms. Faulkner said, her team began writing the code for Care Everywhere. Initially seen as a health information exchange for its own customers, Care Everywhere today connects hospitals all over the country as well as to various public health agencies and registries.

“Let’s say a patient is coming from U.C.L.A. and going to the University of Chicago, an Epic-to-Epic hospital. Boom. That’s easy,” Ms. Faulkner said. “These are hospitals that have agreed to the Rules of the Road, a legal contract, that says the other organization is going to take good care of the data.”

This is a really interesting approach. Blame the government for not applying a standard. Talk about how you’ve had to do it yourself and that’s why you built Care Everywhere. I wish that Judy would come out with the heart of the matter. Epic’s customers never asked for it and so they never did it. I believe that’s the simple reality. Remember that interoperability might be a big negative for many healthcare systems. If they’re interoperable, that could be a hit to revenue. Hopefully ACOs and other value based reimbursement will change this.

The key to coming clean like this though, is to come out with a deep set of initiatives that show that while it wasn’t something you worked on in the past, you’re going all in on interoperability now. We’re a very forgiving people, and if Epic (or any other large EHR vendor for that matter) came out with a plan to be interoperable, many would jump on board and forgive them for past transgressions (wherever the blame may lie).

Unfortunately, we don’t yet see this. I’d love to catch up with Judy Faulkner at CHIME and talk to her about it. The key will be to have a full spectrum interoperability plan and not just Care Everywhere that doesn’t work everywhere. Remember that Epic has charts for about 50% of the US patient population, but that’s still only 50%. Plus, of the 50% of patients they do have, a very very small percentage of them are all stored in the same Epic system. My guess would be that 99+% of patients who have a record in Epic have their medical records in other places as well. This means that Epic will need data from other non-Epic systems.

As I’ve said before, Epic wouldn’t need to wait for the government to do this. They are more than large enough to set the standard for the industry. In fact, doing so puts them in a real position of power. Plus, it’s the right thing to do for the US healthcare system.

Will the interoperability be perefect? No. It will take years and years to get everything right, but that’s ok. Progress will be better than what we have now. I love this quote from the NY Times article linked above:

“We’ve spent half a million dollars on an electronic health record system about three years ago, and I’m faxing all day long. I can’t send anything electronically over it,” said Dr. William L. Rich III, a member of a nine-person ophthalmology practice in Northern Virginia and medical director of health policy for the American Academy of Ophthalmology.

I hope that Epic continues down the path to interoperability and becomes even more aggressive. I think the climate’s right for them to make it happen. They’re in a really unique position to be able to really change the way we think and talk about interoperability. I’m interested to see if they seize the opportunity or just talk about it.

Of course, we’ve focused this article talking about Epic. That’s what happens when you’re the A list celebrity on the red carpet. People want to talk about you. The NY Times article pretty aptly points out that the other EHR vendors aren’t much more or less interoperable than Epic. Feel free to replace Epic with another large EHR vendor’s name and the story will likely read the same.

My hope is that EHR vendors won’t wait for customers to demand interoperability, but will instead make interoperability so easy that their customers will love taking part. Watch for a future series of posts on Healthcare Intoperability and why this is much easier said than done.

Epic Wants to Be Known for Interoperability – Are They Interoperable?

Posted on September 19, 2014 I Written By

John Lynn is the Founder of the blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

Epic has been fighting the stigma of being a closed system for a while now. It seems that Epic isn’t happy about this characterization and they’re coming out guns blazing to try and show how Epic is interoperable. They’re so interested in changing this perception that Epic recently hired a lobbyist to change how they’re viewed by the people in DC.

A recent tweet highlighted a slide from the Epic user conference (Epic UGM) that shows how many Epic patient records they’re exchanging per month. Here’s the tweet and graph below:

Farzad Mostashari asks a very good question, “Does that graph help?” I find Farzad’s tweet also interesting because just over a year ago Farzad tweeted another Epic interoperability chart when he was still National Coordinator at ONC. I’ll embed the previous chart below so you can easily compare the two graphs side by side:
Epic Data Sharing Chart

I think Farzad is right to be skeptical about Epic’s claims to interoperability. First, it seems Epic is finally making some progress with Epic to Epic interoperability, but Epic to Non-Epic systems is still far behind. Second, Epic loves to claim how they have charts for some huge percentage of the US population (currently about 314 million people). I bet if we looked at the percentage of total Epic charts that have been exchanged, it would be an extremely small number. I also wonder if the charts above count a full patient chart or something simple like a lab result or prescription.

I don’t want to harp on this too much, because this is a step forward for Epic. Even if they’re not as interoperable as they could be and as we’d like them to be, I’m excited that they’re now at least open to the idea of interoperability.

With that said, I wish that Epic would spend more time and effort on actually being interoperable and not just trying to say that they’re interoperable. This includes committing the resources required to support connections outside of Epic. I’ve heard over and over from health IT vendor after health IT vendor about how hard it is to get Epic to work with them in any form or fashion. There’s a way that Epic could scale their effort to hundreds of other health IT vendors, but they haven’t made the commitment to do so.

Think about the opportunity that Epic has available to them. They have enough scale, reach and clout that they could by force of size establish a standard for interoperability. Many health IT vendors would bend over backwards to meet whatever standard Epic chose. That’s a powerful position to be in if they would just embrace it. I imagine the reason they haven’t done so yet is because the market’s never demanded it. Sometimes companies like Epic need to embrace something even if it doesn’t drive short term sales. I think this is one of those choices Epic should make.

I’m sure that lobbyists can be an effective solution to change perceptions in Washington. However, a far more effective strategy would be to actually fully embrace interoperability at every level. If they did so, you can be sure that every news outlet would be more than excited to write about the change.

Does the Stockholm Syndrome Apply to EMRs?

Posted on November 8, 2012 I Written By

John Lynn is the Founder of the blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

Paul Levy wrote an interesting post comparing Stockholm Syndrome to EMR software. For those who aren’t familiar with it, here’s a description of Stockholm Syndrome:

Stockholm syndrome, or capture-bonding, is a psychological phenomenon in which hostages express empathy and have positive feelings towards their captors, sometimes to the point of defending them. These feelings are generally considered irrational in light of the danger or risk endured by the victims, who essentially mistake a lack of abuse from their captors for an act of kindness.

Paul Levy makes the case for EMRs being similar to the Stockholm Syndrome based on Epic’s decisions to not integrate with other medical record systems and some of the controlling tactics that Epic uses with its customers. They are interesting and it’s amazing what a hospital CIO will put up with from an EMR company like Epic.

I’d take this idea one step further. I’ve recently heard a number of people ask the question, “Is Epic really that good or is it just the best of the worst?” Doesn’t this sound a lot like the Stockholm Syndrome? Basically defending something that really isn’t all that great, just because it was better that the bad treatment they got from other EMR vendors before.

Paul Levy describes the myth that he thinks is why we are where we are today:

It is a widely accepted myth that medicine requires complex, highly specialized information-technology (IT) systems. This myth continues to justify soaring IT costs, burdensome physician workloads, and stagnation in innovation — while doctors become increasingly bound to documentation and communication products that are functionally decades behind those they use in their “civilian” life.

We believe that EHR vendors propagate the myth that health IT is qualitatively different from industrial and consumer products in order to protect their prices and market share and block new entrants. In reality, diverse functionality needn’t reside within single EHR systems, and there’s a clear path toward better, safer, cheaper, and nimbler tools for managing health care’s complex tasks.

The two killer points for me are the “stagnation in innovation” and the “functionally decades behind” comments. Those who argue against these things usually use a few specific cases of advancement and innovation as opposed to the industry as a whole.

I’d suggest that one of the biggest impediments to innovation is the barriers to entry for a startup company. How many hospitals do you know that would buy software from a startup company? It’s pretty rare. Yet, this is where the very best innovation comes from in other industries.

I still think that there will be opportunities for some startup companies to come along and disrupt the current EHR providers. Epic did it to Meditech in many ways, and I’m sure we’ll see another come along and do the same. However, I think the number of people that can do this is limited to a very small group of people thanks to the way healthcare is organized and done in hospitals. This lack of access leads to a lack of innovation.