Healthcare’s Digital Dilemma: Data Sharing or Data Hoarding?

Written by on October 9, 2023

Healthcare’s Digital Dilemma

The Incrementalist Graphic Don Rucker

This week I am talking to Don Rucker, MD (@donrucker), Chief Strategy Officer, 1upHealth (@1up_health) who is working to solve the interoperability problem in healthcare

Don shared his journey from being a medical student to a physician with a keen interest in data and computers. What he saw was healthcare’s inefficiency is often due to a lack of data, which led him to pursue degrees in medical computer science and an MBA.

Data Liberation

We talk about the challenges of achieving interoperability in healthcare highlighting that while technical standards like Fast Healthcare Interoperability Resources (FHIR) have made significant progress, the real obstacle lies in the business models of healthcare delivery systems. Don shared details on the many entities that continue to resist true interoperability as it threatens their proprietary systems and profit margins.

We dive into the Trusted Exchange Framework and Common Agreement (TEFCA) and the challenges it poses to achieving true interoperability. Listen in to hear Don’s concerns about TEFCA’s limitations and how it might hinder progress. We may be at an inflection point in healthcare where true interoperability that enables seamless data exchange to improve patient outcomes, is within reach, but overcoming entrenched business interests and outdated models remains a significant challenge on the path to achieving this goal.

 


Listen live at 4:00 AM, 12:00 Noon, or 8:00 PM ET, Monday through Friday for the next week at HealthcareNOW Radio. After that, you can listen on demand (See podcast information below.) Join the conversation on Twitter at #TheIncrementalist.


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Raw Transcript

Nick van Terheyden
And today I’m delighted to be joined by Dr. Don Rucker. He is the chief strategy officer at one up health. Don, thanks for joining me today.

Don Rucker
Yeah, Nick. Always a pleasure. So this is actually the first podcast we’ve done. So we’ll, we’ll put always for our prior discussions over the years,

Nick van Terheyden
and always references prior prior meetings, I’ve always been lucky enough to meet many of my guests prior to their actual appearance on the show. In fact, that’s some of the ways that I go looking for guests. So as I do with all my guests, I like to get a little bit of background yours is especially interesting, represents something that not many of us have done, but highly relevant in today’s day and age. Tell us about your journey as a physician, how you arrived there, and then how you arrived at this point in your career, if you would?

Don Rucker
Yeah, yeah. So I first got interested, I knew nothing about data, computers, anything. I first got interested as a first year med student, I was at Penn and looking around on the nursing units, I just thought, Boy, these are stunningly inefficient uses of human labor. Just looking around as a first year med student, you know, still trying to figure out, you know, where’s the heart? Where’s the lungs? What do is the patient? Right? Those, you know, sort of almost scary. Oh, my goodness, a real patient. What do I do now type of things.

Nick van Terheyden
We’ve all been there. I’m just gonna say, practice.

Don Rucker
Everybody has a clinician sort of knows those first few patients. And then I sort of got into it. This was the late 70s with a fella named John Eisenberg was my tutor at Penn vention became head of what is now arc. And so I started as a med student thinking about decision trees. Lo and behold, I got to residency this was at UCS state. And I realized that health care’s inefficiency C’s were not for want of a decision tree, somewhat disappointing, but for want of data. So now we’re talking 81 to 84. And after noodling on this problem, and in cognitive point, at that point, I was 30 years old, I said, You know what, I’m going to go back to school, and learn computer science. And so I was very, very fortunate to be able to do a roll your own program of two separate degrees, a medical computer science degree, and an MBA both at Stanford. So in the early days of AI, rule based expert systems, my thesis advisor, Ted shortleaf, was the inventor of those. And then, still interested as I had been continuously in data, was employee number six of the first Windows EMR company. And for your audience, which since this is

Nick van Terheyden
audio in that name, that company, don’t name that company. Yeah, Nick

Don Rucker
is sporting a t shirt that maybe is not 100% supportive of Windows. And I’ll tell you when you’re programming in Windows 2.1, dealing with memory crashes, every day is is a high wire act. But at any rate, we did that for a number of years, and then was chief medical officer at Siemens helped rollout computerized physician order entry for a number of our large customers of the era was heavily involved in some of the lobbying around imaging, have always at the same time been a clinician practicing. So I was on the clinical faculty at Harvard for Beth Israel for over a decade. I was on the clinical faculty at Penn for over a decade, Ohio State and actually still doing some er practice here locally at local army hospital. So I’ve always had that IP clinical background and varying mixes was very fortunate to be named the National Coordinator in 2017. And I tell you, when that happened, I thought the role was largely going to be to fix the, you know, issues with meaningful use. As it turns out, most of the meaningful use issues had already been undone by the prior administration. But what was out there was the implementation of the Cures Act highly bipartisan, I think 390 votes in the House nine In the Senate a little bit more. And the Cures Act was it was called the 21st Century Cures Act was Congress’s attempt to have modern computing and modern data. So the modern data largely dealt with FDA and evidence and lowering the cost of medications. The modern computing obviously dealt with a winsy and related and was National Coordinator for four years, and put in the rules on that. When, you know, I was a political appointee. So you know, election results, I ended up joining one up health, which is a C round, venture funded firm doing, essentially, modern fire, data computing in the cloud, right? So leveraging all of the cloud capabilities, not just on storing data, not just on moving data, but actually in computing, and having that efficient, some chief strategy officer there. So that’s a overlong tale of the journey, but throw it out there. I do get asked that on a somewhat regular basis.

Nick van Terheyden
Yeah. So it’s fascinating that far back that you managed to blend those two worlds and, you know, actually do some serious study in the computing and medicine at the same time, there wasn’t really a career track, there was no certifications or even qualifications. Now there is I think there’s more folks like that, but it was certainly a struggle in those days. And I felt it, you know, outside of this country, and then subsequently coming in, but delighted to see so many more people. And, you know, obviously, for you fantastic trajectory, underlying infrastructure and understanding of all of that, albeit, you know, a long time ago, things have moved a lot since, you know, that period of time in terms of the computing, but that gives you that foundation, well, I still stay

Don Rucker
current on the tank stuff, right? And do programming every now and then. So, yeah.

Nick van Terheyden
And, and, you know, subsequently helping set some of the course and, you know, obviously, involvement both clinically and, you know, with the technology, but you know, the undercurrent theme, and the one that we’re focused on for this episode is interoperability. And I gotta say, I feel almost as long as I’ve been alive, and definitely, as long as I’ve been involved in this space, we’ve been talking about this. And yet, we just never it’s got to be this Mirage on the horizon that just keeps moving and disappearing off into the distance. Yeah. What, what is your vision? Because I got to believe that’s fundamental to anything that we can achieve in terms of data and processing, and, you know, advancement. What’s your vision for that interoperability, then? Yeah, you

Don Rucker
know, I think we’re perilously close. And some of that is just because we’ve been doing a lot of work in this space for as you point out a long, long time. So to me that on the computing side, we’ll get to the healthcare payment side, which is the real barrier. But on the you know, on the computing side, we now have the pieces, right, what we’ve needed are a electronic data, there’s not much point interoperating on paper, right, the fax is not a helpful thing. So we need a lot of clinical data, we have that EMRs are basically everywhere. Today, we have obviously blisteringly fast networks, which, you know, we didn’t have, I mean, when I started, was before parallel printer cables, which sure dates me out of almost every single person on this audience. But, you know, we didn’t have any of this, you know, the networking stuff today, obviously, we have, you know, supercomputers in our pocket. And then the final thing is, we didn’t have robust computable data standards on the core clinical stuff. Now, we’ve had probably a 40 year journey on, you know, computerizing some of the machine readable data. So, you know, HL seven v two for lab results, DICOM for images, and then with HIPAA X 12 for payments, but it’s only been in the last 1015 years, after, you know, frankly, the misstep of HL seven, V three attempts in CCBA, which are sort of the, you know, the ashes of those attempts that we have the highly computable Fire data standard, which for the folks in the audience, fast healthcare interoperability resources, it doesn’t matter what that says, what matters is it’s in javascript object notation, which is literally the language of the modern internet. And the combo of restful API’s, you’ll have to Google it, it’s a little bit too long explain here are ESP API’s. And JSON is just dynamite from a computing point of view. So I think that part of it, we’ve solved in the US the part that we have not solved, and we’ll talk about that with some of the attempts to prevent interoperability, most notably Kafka, ironically enough, is we have incented. Through years of US policy, we’ve been centered, very inward looking day delivery systems. So the core economic incentive is to merge with as many hospitals as you can, with a goal of capturing high margin procedures. So surgeries, you know, hips, knees, Cardiac Cath, you know, primary care is really, as far as modern hospital system is concerned, it’s just a loss leader. It’s like, you know, going to the grocery store in they give you a cheese sample, you know, taste, right, the money is there. And of course, those referrals all have to be pointed inward for the business model. So the EMR systems have, you know, through no particular fault of their own risen and, you know, and the success in EMR world is how strongly you don’t let anybody escaped than that. Right. You know, in, you know, the executive suite, that’s called leakage, every delivery system studies, leakage, right? Well, if your EMR and your business model is about preventing leakage, interoperability is anti matter, right, interoperability that, especially that the patient controls. So I’m not talking about things like, you know, a provider portal, that the patient can’t effectively get the data out. But it true interoperability where it can go into the patient’s phone, they can take it with them, and they can shop is to be prevented at all costs. That’s why the lobbying against the rulemaking in the Cures Act was, you know, fairly strong, intense. Yeah. Intense. And, you know, people, you know, they didn’t want to say I’m protecting my opaque, anti competitive business model. It would always be, you know, we’re protecting patient rights. Oh, yes. Yes, you know, but so anyway, that battle continues royally today as literally as we speak.

Nick van Terheyden
So for those of you just joining, I’m Dr. Nick the incrementalist today, I’m talking to Dr. Don rocker, he is the chief strategy officer with one up health, we were just talking about interoperability, the vision for it. And in fact, you know, the delightful circumstance that we find ourselves in, or at least I view it as such, and I think you do based on the description that you gave at the beginning of this, which is we have technology that will allow for this in an effective economical way. It’s it’s entirely achievable. And yet, here we are talking about tech firm, and let’s say trusted exchange framework and common agreement, which, you know, sounds like Government speak for, hey, we’re going to create an interoperability environment. And, you know, I think people outside of the environment might actually consider this as a positive move. But you’ve already teased that this is perhaps not so what is going on because ostensibly you look at that and say, Well, this is towards a better future.

Don Rucker
Right? Yeah, well, welcome to the sake. Right. It’s sort of war Well, yet.

Nick van Terheyden
Welcome to America. I’m just gonna say Yeah, well, alright America, and then send complaints. Everybody knows my contact boy.

Don Rucker
Yeah. You know, I think maybe step before we get into the issues with tax cut may be helpful for folks to reflect. And just think about what would healthcare look like if we had that same digital interactivity that we have on our smartphone for every other part of our life? You know, I just paid my car tax in Arlington County, Virginia, which is a lot of money because they have a very high tax rate. I’m not because I have a nice car. Online, right? Done, didn’t even have to lick a stamp. You know, we’re talking, I’m flying out to West Coast tomorrow, I’ll, you know, check in on the airline, I’ll know any delays, I’ll know the weather, I’ll know the weather where I’m going, you know, look at, you know, whatever, sports, anything you want news instantaneous. We have none of that in healthcare. Right? So I urge listeners to think, what would that world look like? And do you want it? Because right now, there’s some people who are fighting to prevent that. And, you know, under the guise of tough guy. And I think part of that challenge is, there’s so much money in health care that folks don’t want to give it up, right, but do build a monster brick and mortar hospital system. And you can look in almost any major town in America. And you see these highly consolidated delivery systems. costing the country, a lot of money, huge chunk of our GDP, we all know. And it’s not like their consumer friendly kind of places, or places marked by, you know, any real extension of life. I mean, obviously, there’s a lot of heroic care going on. And so how do we get the data? How do we move out of those systems? How do we reach escape velocity, that’s what I believe, to interoperability is, the Cures Act had three provisions in it. So 20 16/21 Century Cures Act, passed almost unanimously, by Congress signed at the end of President Obama’s term, heavily implemented by President Trump. I mean, that’s as bipartisan as it gets. I can’t be anything more bipartisan, of substance in the last decades, right, when you get right down to it, and it had three provisions, two of which we implemented the O and C interoperability row with some parallel rulemaking CMS. One provision was API’s without special effort, quoting the exact language of the law, and so without special effort means not proprietary, not convoluted, not, you know, something that programmers of ordinary skill, you know, from kids in the garage to, you know, people plying their living doing programming could do. The second provision was there should not be information blocking. So, historically, HIPAA, you could get your medical record. But typically, you had to go beg somebody in medical records in the basement, to you know, photocopied at great expense. And there have been some partial things on patient portals and, you know, some other file formats that weren’t really modern, convenient, let’s call it to allow people to somehow get their data, but they didn’t work for the obvious reasons. And so Congress said, the assumption is, providers will not may give their data to patients on patient demand, and patient apps of the patient’s choosing. So and this was worded as interfering with the access, exchange and use of health information. Those are the access exchange and use this will come into play. The third part, which didn’t make a lot of technical sense, but you know, stuff happens, and was, was this trust exchange framework, common agreement. Now, as everybody who’s alive in every single person, I can confidently say, listening to this podcast, no, we have the internet. So we actually know what a trusted exchange framework and common agreement is, it’s the internet, right? This is not a mystery. But somehow this got put in DC is a strange and mysterious place. And we were required to hire you know, somebody to evaluate this and there was a contract for the Sequoia group, which is a spin off of some epic funded activities in the past, long, complicated corporate history. The they in the current administration, have decided to have Kafka be this network of what are called cue heads, qualified health information networks, so brokers, so they’ve come up with this network of private brokers that would get participant It’s like hospitals, doctors EMRs. And they would trade this information. And somehow at the edge, you would ask one broker, that broker would go to another broker, and then, you know, they would sort of see. And fin. All these brokers, of course, didn’t actually help the real work, which is figuring out where the medical record is. So that didn’t, you know, that didn’t help there. And it’s document exchange only. So it’s utterly non computable.

Nick van Terheyden
So, it sounds like this is a problem. And a limitation to the future of interoperability. I’ve got to say, hugely disappointing, to anybody that sort of follows this and is a patient. Oh, wait, that’s all of us at some point. And I’m Blake. Well, I don’t know, maybe not. But at least we this is clearly what we need, and what the universe wants. But we have challenges. How do we get there?

Don Rucker
Well, sadly, there was a big step back in the proposed O and C rule. So the O and C rule of hate put in stunningly a provision that once you’re in wrapped in this que han world, you have to take any further information, if you’re an app developer, you’re anybody who wants to be a competitor, in this network of brokers and documents. So you know, parsable, with great difficulty, not modern API’s, the antithesis of that, you know, blocks access with brokers blocks exchange by 25 year old protocols that nobody uses, we don’t have a document centric internet anymore. And the use obviously, is blocked for the same reasons. That was, I believe, put in by, you know, parties who had fought the API’s to begin with, and at least one of the parties wants it, that they want to have the ability in writing to force people to use these ancient protocols and writing, like, you know, paper, email, right? Can you imagine having to write to the devote your airline for your ticket, please send me the ticket by mail. I mean, it’s just that amazingly enough, oh, and see, has currently in the proposed rule, that it effectively undoes API’s without special effort and information blocking it, basically. And the language is, in fact that Kefka participants have a license to information block. Maybe a license to kill was okay for James Bond. But for Kafka participants, right, read the big hospitals in EHRs, to be granted by Oh, and see a proposed license to information block. Wow. So anyway, political world, it’s complicated. And that’s sort of where we are today.

Nick van Terheyden
So tech for Tech Tech for double Oh, seven is clearly or double Oh, eight, they must be big. Yeah. Blow sevens retired at this point? Yes. I’m sorry. That was should have been a spoiler alert. But okay. Tough luck, if you didn’t know at this point. So in the balance of the time that we have, what are we got to do? What should we all be focusing on to get there?

Don Rucker
I think the real focus is rethinking interoperability, as not moving some bit of information, especially not as a document but not moving one bit of information from point A to point B. But really thinking about how do we use computing in preventing illness? How do we use computing and allocating care, as we know cares, sort of extraordinarily expensive, the care allocation mechanisms we have today, prior off, narrow networks, quality measures, Medicare Advantage, those are all things that are threadbare. When you think about what a modern computing environment would be, that’s what interoperability going in the future is to be smart. I mean, today with statins, cardiac CT angiogram and circulating tumor cells, we can prevent probably half of the diseases that kill us today, without any further thing other than the change in payment. So true interoperability is how do we move from the bits and bytes transmission to actually complete yielding to make our lives better the way it has in other areas.

Nick van Terheyden
So unfortunately, as we do each and every other week, we’ve run out of time. So I’m going to close by just reminding us that at the beginning of this or certainly early on in the conversation, when I asked you, you know, your thoughts about it, you said, we’re at the inflection point, the tipping point, you feel like we’re almost there. Despite all of the barriers and the challenges. This is attainable, and it is what we all want. Don, thanks for joining me today.

Don Rucker
My pleasure. Thank you.


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