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Data is the oil that fuels VC health tech investments. Health Systems are the oil fields and last week they shut off the supply to a few VC backed firms. Today, we explore.

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Today in health, it epic. Versus particle health. And the larger discussion around health information exchange. My name is bill Russell. I'm a former CIO for a 16 hospital system and creator this week health. Set of channels and events dedicated to transform health care. One connection at a time we want to thank our show sponsors who are investing in developing the next generation of health leaders.

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You said it's a foundation for daily or weekly discussions on topics that are relevant to you in the industry. They can subscribe wherever you listen to podcasts. All right, this is the I dunno, this is the event that everybody's talking about today. Epic V particle. I have two sources. One is Brendan Keillor's. Sub stack newsletter. He is, and it's titled epic V particle.

So sorta took that from him. The other is the healthcare blog. So Matthew Holt, if data is the new oil, there's going to be a war. And boy is that true? The while there's been skirmishes over the years, but now we're seeing the skirmishes. Escalate a little bit. And it's getting interesting.

I'm going to stick to Brendan's for a little bit here. To give you some background. You guys know a lot of the background, my listeners. Our healthcare professionals. And I say the word care everywhere. You know what we're talking about here? We're talking about epic to epic sharing of information care, quality. Is the equivalent for epic to non-Epic exchange.

CommonWell was a competing network, essentially stood up. By a Cerner Meditech and others. And then they essentially CommonWell, eh, and care, quality. Were they were competing networks, but then there was a human or there's a union of these two networks. Into the e-health exchange. And the, it created a A significant network for the sharing of data. He goes on and some of this is going to get into the weeds a little bit.

And so some of you may or may not know this stuff, goes on EHR where the initial organization that joined informed care quality and Commonwealth, both networks began to allow on-ramps to the network to make implementation easier, especially as CommonWell defined a CommonWell connector in 2020. These on-ramps insulate their customers from some of the pain points of using the network such much like Stripe does for credit cards. They offer value adds such as an easy API translation from legacy standards into a more modern fire. D duplication of data, user interfaces, integration of retrieved data into EHR is a more notable first-generation OnRamps were particle health Barilla, no two K N O two. Number two. Zeus health. Redox access SU. Surescripts R L E one record inner systems. And you should be familiar with the Topeka framework we've talked about on the show.

Many times we've talked to Micky Tripathi and others on the show at length about the trusted exchange framework and common agreement. And what that is about, but essentially that sets up the foundation. For sharing and the the network that we're looking at today to take this forward. That is falling under the the guidance of this Korea project and the many other. Players that are connecting into Tasca. So key concepts in here is purpose of use and reciprocity. Okay.

Pur purpose of use. Has been, and I'm getting a lot as right from this article. Great article. If you haven't had a chance to take a look at it, go ahead. You could hit it on our website and it'll take you over there. And he talks about purpose of use when accessing health data. The purpose of use has been an important since HIPAA. That law and associated regulations recognized that protected health information should only be accessed and used for specific legitimate reasons. Related to healthcare operations treatment. And payment or other permitted purposes, it helps to safeguard the privacy and security of individuals, health information by restricting. It's use to authorize entities and purposes, because as you would imagine, these health networks have a ton of information about me and you and everybody else who's out there. And this this on-ramp. Kind of organization gives people a way to connect and get that information.

So purpose. W is very important and the purpose should be around treatment. Or payment or healthcare operations. You get the picture and then you have reciprocity. These networks only work. If there is reciprocity, meaning I'll share my data. If you share your data. And so if I'm not going to restrict my data from being shared, I expect you not to restrict your data from being shared. And there's a lot of different he actually pulls a lot of the stuff out here.

I'm not going to go into it in too much detail. But he has actual verbiage from the various documents from care, quality from CommonWell highlighting these two concepts. And what they're about. Okay, but that is the background. We now get into the event. On April 5th. There was a discussion and rumors that Parco health had been shut off. From care, quality or blocked by epic. Okay.

So there's a couple companies here. That we mentioned some of the on-ramp companies. And those on-ramp companies then have other third parties that are connecting in and getting information. Let me go to some of those real quick, just so you get an idea of who's connecting in here. There was a couple that were listed by name. And I'm going to go through a couple of those. Revealer and MD portals, which are actually one company now. Let's see.

Matthew hold's blog now. So what do they do? Revealer revel, Lear, sorry. R E V E L E R says that leveraging our AI enabled platform with NLP. And MD portal, sophisticated interoperability allows us to deliver providers. A pre encounter clinical summary of patients within their EHR workflow at the point of care. So clearly that is about treatment. Or was she acknowledged?

It sounds like treatment to me, but revel Lear does also does analysis for health plans. And you can see why hospitals might not like that. So this is Matthew Holt gets the Dame health care curmudgeon for itself. Self-professed healthcare curmudgeon for a reason. And he says but you see how this works,

so they're using it for one thing. They're also using it for another now. One is clinically motivated and it's around treatment or the other is in support of growth. These VCs want to grow and in order to grow, they have to sign up these other use cases who are going to utilize the data. And so they went after the health plans. And. Do you shut off access to revel ear or do you not shut off access? To revel ear. That becomes the challenge.

Nova Leia is a PHR company, presumably using treatment. To enable consumers to access their data and manage their own care. This is exactly what the 21st century cures act was put in place to do. And and actually he notes us. This is that, that incident, which we have conflicting stories about, but essentially. Where. Judy says, why does the patient need their record? What are they going to do with it?

Are they going to, they're not going to understand it. And there was a back and forth between her and Joe Biden. That seems to have been swept under the rug a little bit here, but it, it's just like everything else. It has enough truth in it that you look at it and you got. Yeah, that feels like it probably did happen. PHR company, should they be able to have access, to give patients access to the data? And I'll let you figure that one out.

This one's a little more clear. Cut. Integrity, tort integrity court. Yeah, man, these people name, their companies really wild does sound like it's looking for records. So at, or its law firm, customers can Sue someone for bad treatment. Or as it turns out, defend them for it. Is that treatment under the HIPAA definition?

Almost certainly not. No, it's not. And it's crazy. You don't cause you, cause it's not in the best interest of a health system to provide access to integrity. Two. I essentially allow people to look at their medical records for an op an opportunity to Sue the health system. If you're the network acting on behalf of the network participants, allowing that access does not seem to make too much sense. Anyway, that gives you an idea of some of the players.

So let's get back to the timeline. April 5th, particle health has been shut off by care, quality or blocked. That's the first hearing of it. And it's from Rebecca Mitchell. Who's a doctor. I just heard epic shut particle health off from the HIV. Widespread impact to particle health customers. And he goes on Epic's behavior would be particularly notable in that shutting off traffic of a particular implementer on the network is both unprecedented and disallowed by network rules, except in one specific scenario as Dave castle. Pointed out.

All right. So remember reciprocity and use. So how are they? How are they using it? And Dave castle points this out a care quality implementer, epic particle health. It is permitted to suspend exchange with another participant. If it has reasonable and legitimate concerns related to the privacy and security of information that is exchanged. The caveat is that such a suspension can be kept. In place for an extended period.

Only if a formal dispute is initiated. On the ninth, Bobbie. Ghoulish. And I made a video to discuss the principles of the network. Why my epic stop responding. Number one, data was being requested by entities without legitimate treatment use case and or reciprocity at data sharing was not being fulfilled.

And clearly they're saying particle health is the first. Particle health posted a statement the same day, confirming the rumors and addressing things. Similarly, Troy banister, founder of particle health, posted a statement and the same day expressing deep concern about Epic's recent decision to stop responding. They're their cases, essentially.

Hey. We didn't know this was going to happen. And then of course, a lot of information comes out that essentially says there had been conversations going on for weeks about this before they finally said, all right, we're just going to shut it down. Troy banister, who is. I'm sorry. That's not Michael merchant, the director of interoperability and innovation at UC Davis health and the chair of the character or governing council did show some perspective on why epic may have taken action at the behest. And the request of the health system customers.

We felt they were at risk trade minister as chair of the, so he's responding to somebody of character where governing, I want to assure you that this action was not unilateral decision by epic evidence shared over the past month appears to indicate not all particle participants should be permitted to exchange under the treatment P O U the direction to move forward.

Removing directory entries and filing the complaints was authorized by the governing council. And he goes on to talk more about that. And then he cites again, great article epic V particle sites, a whole bunch of people who have additional comments on it. Then on April 11th, we have the issue notification. Which you can view.

Cause he has that in here and potentially inappropriate disclosures of protected health information through the care quality. Interoperability framework. The full notice is worth a review and he gives you access to it and it cites integrity. Rev.

MD portals amongst others. With regard to it and has information on that. So you says what comes next in his article? He said, what comes next? He hopes it's going to be, Negotiations to resume exchange over the next couple of days. And that's probably what's going to happen is that there will be negotiations conversations. There could be. All sorts of Entities weighing in on this as we go forward. Let's see. He actually has some really good things to say here.

So Brandon. Says these events occurred because fraud and abuse are happening because the status quo of the network. Oh is only working four of only working for treatment leads to worst possible incentives. Health data is needed by a broader set of stakeholders in order to serve the patient. Again, everyone who's looking at this is looking at it through their lens. Hello, Eric. Health API guy.

So he's looking at it through the lens of, Hey, how do we deliver better care for the patient? And in order for that to happen, more people need access to that medical record. And he's saying, payers need access, health navigators, insurance, brokers, life sciences, public health organizations, life insurers. And most importantly, patients need asset access to. That data. I will say the fact that's listed last is so concerning to me. Because we're so worried about these massive entities, massive billion dollar entities and how they are using the data.

Data is the new oil and how they're using the data to position themselves in this new world. And the patient is being thought of. At the last possible resort. Now we're saying, oh, it's. It would help the patient for the life, insurers and others to have access to the data. Would it be in my best interest for the life insurer to have access to my data, my health data in order to write me a policy. I don't know. I eat. I don't really know. As a, uh, as a patient, but I do know this.

I want to have the option to share it with life insurance. I want to have the option to share it with public health organizations, to share it with life sciences, to share it with the health navigators, to share it with payers and other providers. The problem is. And now we're getting into me. This is me talking right now. My lens is as a former CIO for a health system.

And my lens today is as an employer of a 10 person company. And it's also as a patient and someone who's cared for their parents, somebody who's cared for. My wife's parents from afar and whatnot. And I believe this whole thing breaks down because we are doing everything in our power to protect these large entities. The patient needs to be the locus of the health record. Period. And the patient is not the locus of the medical record. Today. In fact, the patient w we often hear these things, and they're even said by health system CEOs, I said, oh, it's the patient's data. It's not the patient's data, it's information about the patient, but it's not the patient's data. The patient only owns the data in one state in all 50 states of the United States.

One state has a law on the books that says the patient owns the medical record. And all other 49, we do not own the medical record. The creator of the record owns the medical record. And the creator of the record is usually the care provider who works for an entity. And then that entity owns that medical record. Okay.

And until that changes. That they own the medical record now. Laws and governance has come into place and said, Hey boy, how 21st century cures all this is about breaking that up a little bit and moving the data out so that it can help the individual. But I think these are all, trying to maintain the status quo of power. And still share the data in a way that helps all the most powerful people in the system. With the patient at the locus as the locus, I think Todd park had this right. Todd Park's assertion was essentially give everyone a button.

They can click and download the information to their phone. Or their computer or whatever they want to download it to. Their entire medical record, all their claims. You name it, download it. Blue button. That's what it was called. He was heading in the right direction. I would like to go to every health system that I've ever been at and click a blue button and download it to my phone. Quite frankly, I trust my phone. More than I trust where it's sitting today in some health systems repository. Look I'm not being inflammatory here. But the numbers just prove it.

Health systems are a target and they're not a hard target for these entities to crack into. And they don't seem to be having a problem, getting to the crown jewels and taking. The the medical record. And so I would feel better if my data did not reside in any of these health systems until I showed up. So I would have the data. I would be the locus of the information.

I would share it with the providers that needed that data. I would share it with the providers that I knew could protect my data. And I would have the option. If my data got breached from one of the health systems, if I could pull it from their system and say, you no longer have access to it. Like I, so I have the ability to go from one data or one provider to another provider based on their ability to secure my data. And to protect my data because that's part of my health as well is protecting my data. And my privacy. And then I think we can open up access through the patient.

So if we say, look, every health system has to share it with the patient period. Let's stop there. They have to share it with the patient. And then the patient becomes the locus of sharing it with the rest of the world. It comes through me and then I have a choice. Do I share it with life insurance?

Do I share it with public health? Do I share it with life sciences? Do I share it with health navigators? Do I share it with payers? And I may choose to, based on the services they offer me, let's make the patient, the most powerful entity in this equation instead of continuing what clearly is not working. Which is allowing others to care for.

In fact, the arrogance of it is amazing to me. It's like we continue to protect the most powerful entities in this equation. Who continued to drive up the cost of healthcare over and over again. And, and think about that. Think about how crazy this is. We have these on-ramps and these on-ramps are run by VCs and the VCs incentive is growth. It's growth.

They want to take these companies public. They want an event where they make a lot of money in order to do that. They need to grant access to as many use cases as makes sense. So they're going to continue to push this needle as far as they possibly can. And the the providers are going to continue to pull away from this as much as they possibly can.

There's going to continue to be that push and pull. Whereas, if you gave the data to the patient now has the power. People are going to be going to the patient saying, I can serve you better. Let me tell you what I can do. Now. We're worried about the patients not knowing what they're going to do with the health data.

I don't know what to do with my health data, but I tell you, I think I can shop well enough to find somebody I trust who is going to know what to do with that data. And now they're marketing directly to me. Patient as the locus of the health record. I think it's the answer to this? Not that you were asking, but I think this is one of those problems.

That's not going to go away anytime soon. We're going to get a little progress here, a little progress there. Look, I've been in healthcare for the better part of a decade, and it's been a very little progress for 10 years, patient as the center, as the locus of the medical record, I think would. Dramatically change things anyway. That's my 2 cents.

Take it for what it's worth. There's not a huge coalition of people lining up behind me, by the way. So be careful with that opinion. Because when I throw it out there, people look at me and they go, that makes sense. It'll never happen. It's usually the response I get. And it's a shame anyway, that's all for today.

Don't forget. Share this podcast with a friend or colleague you said is foundation for mentoring moving forward. In fact, you could talk about this and say, how crazy do you think bill is? Anyway, we want to thank our channel sponsors who are investing in our mission to develop the next generation of health leaders, notable service.

Now, enterprise health parlance, certified health and Panda health. Check them out at this week, health. Dot com slash today. Hey special. Thanks to two people. Brendan Keeler. Great. Write up epic V particle. And of course, Matthew Holt always does great work over at the healthcare blog. So we really appreciate them. Putting, pulling all this stuff together and doing a great job with the 📍 journalism. That's it.

Thanks for listening. That's all for now.

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