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May 6, 2022: In an industry marked by rapid turnover and burnout, Mariann Yeager is an anomaly. This year, she is celebrating 10 years at the helm of The Sequoia Project, a public-private collaborative formed to advance implementation of secure, interoperable nationwide health information exchange. What was the lay of the land with regard to interoperability 10 years ago? Why was data exchange so hard at the time? How did the pandemic impact the interoperability landscape? How has the 21st Century Cures Act changed the work of the Sequoia Project? How would we like to see patients engage with their data over the next five years? What work is The Sequoia Project doing to support the implementation of TEFCA?

Key Points:

  • In 2012 a lot of healthcare was not yet digitized. We were just starting to see that evolve.
  • The goal of TEFCA is a single on-ramp for connectivity nationwide
  • There’s a big push in the US for a national patient identifier
  • AI and machine learning are bringing up a whole new set of problems with our data
  • The Sequoia Project

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Today on This Week Health.

As an industry, we've done tremendous work and made a ton of progress in enabling the sharing of health information to support treatment. But what we haven't seen is participation by other players that have a need and interest in accessing and sharing information such as health plans and public health and providers really across the continuum.

Thanks for joining us on This Week Health Keynote. My name is Bill Russell. I'm a former CIO for a 16 hospital system and creator of This Week Health, a channel dedicated to keeping health IT staff current and engaged. Special thanks to our Keynote show sponsors Sirius Healthcare, VMware, Transcarent, Press Ganey, Semperis and Veritas for choosing to invest in our mission to develop the next generation of health leaders.

All right. Today we are going to be talking about the exchange of patient data and all things interoperability with Marriann Yeager, Chief Executive Officer for The Sequoia Project. Welcome to the show, Mariann.

All right. Well, thank you very much, bill. It's delightful. I'm delighted to be here.

Yeah. I'm looking forward to this conversation. This happens to be April 23 is going to mark the ten-year anniversary of the Sequoia project. Congratulations.

Oh my gosh. Thank you so much. It's an exciting milestone to celebrate for sure.

Well, 10 years actually that kind of mirrors when I got into healthcare, I came in as a CIO in 2012 and I'll be honest with you. When I came in, I couldn't believe the state of interoperability. So actually let's, let's start there. Let's start with a history where we started with 10 years ago. where were we at? What was the state of interoperability back then?

I know circa 2012, there were certainly some early experiences and we started seeing the evolution of health information networks. As healthcare organizations got more digitized, they had the ability to also share information with others that use the similar EHR platform or, healthcare organizations that use different health it platforms via networks. So we were starting to see large health systems, for instance, what I would say we're on the cutting edge or leading edge of that. And back in 2012 a lot of healthcare was not yet digitized. And so we'll just starting to see that evolve. So I think there were, again, early experiences.

We got our start by being a stool or an initiative that was incubated by ONC called the nationwide health information network. The first records exchange via that network or actually in February of 2009. So fast forward to 2012, there was real information being shared for patient about patients receiving care in the private sector, through governmental facilities.

And it really had moved beyond sort of a proof of concept and it needed a corporate home in the private sector. And that really was what inspired the creation of Sequoia.

so who founded the Sequoia project? How's it organized and what's its what's its charter.

So we I was actually a contractor at ONC back in in the day and working on the NHI N and there were a group of governmental agencies and the veterans health administration, department of defense, social security administration, and a number of health systems and HAES, and we're sharing information with each other through that program. And so when there was a decision to move that network operational support, cause it's governed by its own governance structure.

That was what led to the formation of this core project. So it was, that was in a founder's. Anchor tenants who participated in that network and they really did the vetting to assess is there a value to having sort of the shared approach and a shared trust agreement to facilitate exchange and came back and said, yes.

So I actually helped write the business plan and the company was started and structured as a non-profit 5 0 1 C3. So we were chartered to really with a broader mission beyond just supporting, providing network operational support, but rather there was anticipated. Need to have an organization that brought together stakeholders from the private sector and government to work on issues, impeding interoperability.

And that, that meant we could stand up other initiatives that were independently governed and that because we operate with the public admission, it was very in keeping with the origins of the effort, which were started by government. And we also recognize that there might be a need to actually partner with government that we couldn't be an extender of the work that the government was doing because we had boots on the ground experience in an operational capacity.

So public benefit corporation to advance interoperability on a national scale, I would assume.

Nationwide scale. Yes.

Fantastic. You know what I'm trying to think back to. So I came from outside of health care, come into health care around 2012. And as I'm looking at the lay of the land, the what made interoperability so hard, first of all, was there was many more EHR than there are today. I mean, there's been some consolidation and, and of that, of those platforms. And so I remember trying to build our clinically integrated network and literally it was a hundred different EHR.

And so that was challenging in and of itself. And then we actually got into the data and realized that not all of it was discrete data elements and moving it around was very difficult. We ended up using a regional HIV. To share data between certain aspects. And then I realized the limitations of that because it was only certain data sets and whatnot. what What makes it so hard as it, is it that complexity that the people don't appreciate?

Well, I think there are there certain building blocks you need to have interoperable information sharing that occurs seamlessly. The first is that you really need standards to be integrated into the health it platforms, whether it's an EHR, an HIE system, and the way that health it was digitized was accelerated through these governmental incentives in a way that wasn't ever how the market would have evolved on its own. And so there has to be a level of specificity, and constraints on the standards. So that one systems as you exchange information between different systems or between different healthcare organizations entirely or across geographies, that there is that consistent interpretation and the ability for those systems interoperate. So we actually had to go back and what are we really tie some of this success and progress to is that we actually had to go back and retrofit interoperability into these existing platforms that are already deployed. And they'll how hard that is to do. So it took probably about seven, eight years to mature the standards to get consistency and constraints and testing really rigorous interoperability tests. And then we also evolved to also recognize that the value of the data wasn't really there.

It's still is in a, we there's a lot, we need to do to improve that. So we started by supporting a content testing program and testing data sources. So rather than recognizing that testing a system that is not deployed in a live environment, isn't really reflective of. Is operating in the real world. Cause there's all kinds of integrations and configurations that are made. And so really doing that content testing is probably the next level of focusing.

So here's where I'm going to go with this. What I want to talk about the impact of the pandemic. That's probably not the first thing we're going to talk about. I want to talk about 21st century cure. So I feel like that's almost the starting point for what our modern interoperability framework is going to look like. But I also want to talk about some of the some of the wins and successes. Through the years, I'm looking at a slide here of, we have the e-health exchange, which was. But still has a relationship with square project. We have care quality, which was spun out also as a relationship pulse, our, a program interoperability, merit matters. Talk about some of those entities and what has happened over the last 10 years with those.

So we got our start being a steward for the e-health exchange, which was rebranded from the NHIM when it moved from government to the. Sector. And so that network is, has its own governance and structure. And then two years later, we actually were contacted by groups of stakeholders who wanted to interconnect networks, like the e-health exchange with others, and they wanted to do so in a standardized frame. And that that involved a lot of the building blocks that we see for the 21st century cures contemplates that there was one agreement that all the networks would agree to abide by and it pointed to a constraint set of implementation guides rules of the road, so to speak. And so in 2014, carry quality was formed and then fast forward to 2018 and all of these activities and the testing program that we were supporting for the radiological society of north America, that is a means to improve and advance the ability to exchange images, which today are largely as a lot of CDs still in place or new duplicative scans and whatnot.

And so all those activities were actually operating under one corporate entity Sequoia. And so we realized that there really needed to be a separation of interests. And particularly as the e-health exchange became one of the connected networks and carry quality really couldn't have one part of the organization carry quality enforcing and governing conformance or compliance with another.

So we did restructure there are now three organizations, they have their own. Boards their own network governance. And so there are some management services. This equate provides not really a relationship per se, as much as there's dedicated staffing and whatnot to each. So just marketing support and things like that.

The important thing for us to realize that the Sequoia was we're really adept at incubating and launching new initiatives. And so we realized that there maybe needed to be a systematic approach to how we identify priorities to work on. And that led to the formation of interoperability matters, which is a public private cooperative.

And it's led by our membership, which is really just some of the leading minds in health it, and they every year assess what the pain points are for interoperability. And then we go through a consensus process and identify, okay, what is our next charge? So you can imagine with information blocking compliance coming to light, that's becoming very real now and will be enforced once OIG publishes the enforcement rule that we started with that because we knew that if you're not blocking information, you're sharing it. And again, that's really our goal. And we had concerns that unless there was cooperation among the different actors that might be involved.

Information blocking scenarios that it could be weaponized. And we wanted to create a, really, a community of practice and spirit of cooperation around that again, to help navigate these very complex policy and technical issues, which are really at the heart of what we do day to day. It also led to working on data usability to improve the semantics and the value sets, code sets of information exchange so that the data really have more meaning consistently, regardless of the manner of which there the information is exchanged.

And then you mentioned the pandemic. We actually facilitated a group of leaders from federal government and state government and local jurisdictions and from the private sector as well to gather lessons learned from the pandemic. Where were we struggling to get information? Where was their resilience and what can we do to improve it? And so we wrote a report with 17 recommendations for improvement there, and then our work continues to evolve. Of course.

πŸ“ πŸ“ We'll get to our show in just a minute. As you've probably heard, we've launched a new show TownHall on our Community channel. This Week Health community. And it airs on Tuesdays and Thursdays. I'll be taking a back seat to some of these people who are on the front lines. TownHall is hosted by an array of talented healthcare leaders who are facing today's challenges head-on. We're going to hear from professionals and their networks on hot button issues, technical deep dives, and the tactical challenges that healthcare faces. We have some great hosts on this. We have Charles Boicey and Angelique Russell, Data Scientist, Craig richard v ille, Lee Milligan, Reid, Stephan, who are all CIOs. We have Jake Lancaster and Brett Oliver who are CMIOs and Matt Sickles, a Cybersecurity first responder. I'd love to have you listen to these episodes. You can subscribe on our Community channel. This Week Health Community, wherever you find and listen to podcasts. Now let's get to the show. πŸ“ πŸ“

So we get to 21st century. we've had Mickey on several times. We've had Mickey sorta like Cher. You just say Mickey and everybody knows who you're talking about interoperability world. And we've had a nice chopper on as well. who I classify as a, I don't know he is, he's the cheerleader now. Cheerleader is not the right word. he's sort of a. Yeah, he's the person out there really spreading the vision. And so we've, we've talked a lot about different aspects of this, but 21st century cure sorta changes the game completely and bipartisan.

We've talked about this many times on the show, bipartisan you have so many components of it though. I think people sometimes get tripped up because you have us CDI, you have the you have TEFCA, you have different aspects of it. And now we have the rule being written.

Then we have the enforcement being written and there are different entities that are doing both. and so in my world, in the, provider world, there's a lot of this. Is this going to happen? Is it happening? And every time I have somebody on the show, it is happening. There are dates in place and this is moving forward. And I wanna, I want to talk a little bit about probably tough because the. Most relevant to the square project. So explain Tesco a little bit and what square project's role is in that?

Oh sure. So in December of 2016, Congress passed a law called the 21st century cures act, as you mentioned. And there was a part of that that really spoke to the need for a government endorsed approach to promote interoperable exchange of health information for the nation and looking at. The components that existed and what can we do to further enhance it? So the Congress basically charged ONC to convene stakeholders to either develop or support what they called a trusted exchange framework and common agreement or Tesco.

And the idea was that this would be a framework that could be put forward. To that networks that wanted to receive this government designated status as being Tesco compliant could seek and that they by doing so they agreed to the terms of a legal agreement. The common agreement, there's one agreement that everyone would sign all the networks, which they call qualified health information networks with sign.

And then. I'm them to a set of obligations to share information with organizations who connect to completely different and unaffiliated networks from their own. And so the idea is focusing on what the rules of the road that could apply fairly universally among these qualified health information networks, so that there would be enhanced exchange of information for a much broader set of purposes than we see in simple treatment today.

So as an industry, we've done tremendous work and made a ton of progress in enabling the sharing of health information to support treatment. But what we haven't seen is participation by other players that have a need, and interest in accessing and sharing information such as health plans and public health and providers really across the continuum.

And for a multitude of purposes beyond treatment. And so by having the government really lead in that and establishing or supporting a trusted exchange framework and common agreement was seen, I believe to be very much a level setting and creating a piece of critical infrastructure for the nation that we haven't really been able to realize fully to date. So the great thing about Cures and ONC was realizing that this is a real operational activity and that they had the opportunity to work with a private sector organization, that they would work with an official capacity as a recognized coordinating entity. And the RCE and Sequoia was selected to serve that role in August of 2019, which you can imagine was a true honor. And we've had experience doing this kind of work before through our history historically, and with carry quality, which is sort of a private sector's version of Topeka. And so what that means is that we operate with ONC under a cooperative agreement, which is kind of granted. Nature of that allows us to work as more of an integrated team.

So we were brought on the inside of a governmental process and had the ability to work with ONC hand-in-hand on the terms that QHINs would be subject to must comply with what implementation guidance, specifications, and standards would have to be supported requiring that at a minimum, the exchange of us CDI, having very clearly articulated expectations on.

For what purposes information must be exchanged and where you have to respond. So for instance, there is no option. You cannot refuse to exchange information for treatment purposes unless it's illegal to do so by law. And similarly to enable to respond to requests for an individual consumer's request for their own information.

And it also accounts for support of a much broader set of purposes all under this common framework, this single framework to support. Payment healthcare operations, public health, individual access, and government benefits, determination, and possibly adding to those purposes over time. The idea here is that having a government endorsed approach carries a lot of weight. And even though it isn't mandated per se, but having these policies and this approach vetted by government has a lot of value to it.

So who are the largest QHINs?

So we're in the process we publish. Some of the key components that are needed to operationalize this QHIN program. And we would, the RCR role is to not only help ONC develop the primmer, but we operationalize it. So we will work with candidate QHINs to vet that they meet the criteria that they had satisfied all the expectations. And then we countersign that agreement and then have an ongoing enforcement role. So we published the agreement. We published the implementation guide and some of the other operational standard operating procedures in January.

We're packaging up the next round of artifacts to release, which would very soon one of which will be an application and an onboarding and designation process for candidate QHINs. So there are no QHINs today. Now we have heard, there are networks that are interested in seeking that. And you can talk about the characteristics of what that network might look like.

And then there are also obligations that ACU him would need to flow down to the organizations that connect to their network either directly or through other seven entities. That's where healthcare organizations play a role healthcare organization would be a participant in a network, or if they connect to an HIE and that HIE connects to acute and they might be what's called a sub participant. It's that there's certain obligations that flow down around privacy and security and the appropriate uses and disclosures, cooperation, incident response, things like that.

Yeah, I'm looking at one of the ONC again, a slide deck. It has QHIN at the top, and then it has individual users accessing that analytics, products health systems, obviously EHR products and whatnot. You have health IT providers. Pharma players consumer apps and whatnot. So is the thought process here. That the mechanism for securing the, data for privacy and all those things, is that at the QHIN level or is that at a different level?

So QHINs hints have are expected to, to be highly. Highly secure, high performing networks, a corollary, maybe to the ATM or cell networks where you don't have a million of them. You just have a number and they, they route the transactions to all the other parties event to which they're connected. And so the. But there is going to, there is a high bar of security for QHINs are going to have to have a security accreditation.

We're going to be publishing a standard operating procedure with more details on that here shortly. And then they're going to have to prove that they have good technical security controls in place and et cetera. Now it's possible that there could be a. QHINs or other actors in a tech ecosystem or in the ecosystem that are not subject to HIPAA.

I think most healthcare organizations are very familiar with their obligations as covered entities or business associates under HIPAA. And so you would definitely point to that as sort of a standard of practice among and across the network. But for those who are not subject to HIPAA at all, This contract was able to bridge a gap in current policy where there are some players that are not subject to HIPAA.

They might be a healthcare provider that doesn't build administrative transactions to HIPAA doesn't apply to them, or it could be an app developer that provides a platform and a way for consumers to access their health records. And so the agreement was able to establish that if you're not subject to HIPAA, will you have to comply as if you were a HIPAA covered entity and it's. The specific activities they're supposed to be able to get it, to support that's at the QHIN level, there are also expectations for privacy and security for those who connect to QHIN either directly or through another intermediary. And so we're going to be publishing. Standard operating procedure with more details on that.

And I can tell you that again most folks in this space are likely are already subject to HIPAA. We're trying to really respect that and be consistent, but also bridge gaps where there may be folks who aren't subject to HIPAA that that need to be held to a similar expectation.

So the goal of TEFCA is a single on-ramp for connectivity nationwide. The RCE sets policy working with the ONC in conjunction with the ONC sets policy and or recommends policy, but then oversees the operation of this, making sure that it is a highly functioning secure network that facilitates that goal. National interoperability across the board. Is that pretty close?

I think it's pretty close. I think the roll ONC would definitely be the authority and setting the policy. We definitely inform it because of our experience in the field and having supported similar endeavors for the past decade or longer and then ONC. Inherently governmental functions that they can't delegate such as approving policy that's in the common agreement, if there are changes to it, but they've delegate a lot of responsibilities to the RCS equate as you've characterized bill very much working with the ONC to to develop a, maintain these components, the the agreement and implementation guides, but also operationalize the testing and onboarding for supporting the governance structure that will be established where they'll include representations from the QHIN and participant groups. And that they would be the ones that government we would support that will facilitate a secure cybersecurity advisory council because this. Really in a central part of critical infrastructure in the U S that you can imagine the sensitivity and importance of protecting it, being proactive in doing so.

And that's how we actually engaged a chief information security officer for the RCE who will facilitate a cybersecurity council

what's interesting to me, I think we Really pushed back on meaningful use. And we say, oh look all these unintended consequences, we didn't really think it through. And then I hear people talking about 21st century cures and they're like they really haven't done anything yet, but it feels like you've done a ton of stuff, setting up the foundation to make sure we don't have this same problem that we had with Meaningful use.

Well, that's right. And meaningful use was a unique point in time because so much of health care at the time that the NHS. Some of this early governmental work started was largely paper-based. And so the whole healthcare delivery system was wasn't even digitized until later it was a meaningful use, definitely accomplish that, aim the promise and the opportunity that TEFCA presents is the ability to establish.

More of policies and technical requirements that apply across the board that are enabling so that re recognizing that there is no very fractured industry, lots of different technology platforms. There's not going to be one technology platform or one network in probably in my lifetime, at least in how can we knit those together?

The interesting thing, and this is, this is in our experience, it takes about two years to develop the foundation. And it could maybe take less time. However, it was really essentially important for us to make sure we got feedback from the stakeholders who would participate in Topeka. And frankly, and this, if folks are participated in having an involvement in informing and shaping this.

They're more, there's more buy-in. And then you also know you have some assurance that you hit the right mark. And so for us, we've been extraordinarily sensitive and open and embrace feedback. And so even as we continue to iterate and release other standard operating procedures and a fire roadmap and all, everything around that that we'll continue to get stakeholder feedback.

Now it's like any good it project. It's going to take a year or so to get early adopters on board, it's going to take another two years to start seeing some traction refining, and then you start ramping up from there, but doing the solid groundwork upfront and getting it right, will be an accelerant to the future.

It's a lot better than redo things after you've done the patients. Let me ask you the data sets. So are the data sets driven by UFC BI or is this is another group looking at it saying, look, these are the initial data sets that we should be moving.

So, and look at it. There are the standards that are being employed for the first set of functionality, which is there to exchange modalities, being supported, query and retrieval of documents called pull documents in a push of clinical documents. That's called message delivery. The standards that are. Required by QHINs hands to support. Now they can connect and use whatever standards they want to the intra network, so to speak. But between the networks, they have to support a set of standards and profiles by the integrating the healthcare enterprise IAG.

And of course the HL seven consolidated CDA. So that's really the most mature and prevalent set of capabilities that exist today. And a minimum populating that with. DDI, but you can the large part you can the CDA can be discrete data along most of the ton. A lot of times it is, but it could also be a PDF or whatever. So the idea was to be fairly flexible, to allow whatever information is readily available, whenever form to be conveying.

I want to put my old CIO hat on. And just talk about implementing interoperability. Most choose to implement interoperability through their system of record, which is the EHR and the EHR provider. Is there a distinction at this point between How the various EHR players are implementing interoperability. does that question make sense?

It makes total sense and you're absolutely right. So in the early evolution and what we have today, I would say there are some networks like the e-health exchange that connects a large number of HIV and a large number of healthcare organizations, which are enabled by the EHR vendor and others, like DaVita and in pharmacies. And, there are other networks like CommonWell that. We're really founded by EHR vendors that felt Hey, we need some other infrastructure and a record locator service in a different architecture to enable it. And then there are some EHR vendors that are networks in their own, right?

Like Athena they're, Athena net. So I would say that the EHR vendors today either enable their customers to connect to a network like Commonwealth health exchange or. Significant portion of EHR vendors are represented through Kerry quality, security, quality brought together networks like Surescripts and CommonWell and e-health exchange and other technology enablers that are serve as intermediaries, like know to, and health gorilla.

And then there are vendors, EHR vendors in their own, right? The standards they support the various standards that were recommended and being adopted through TEFCA And that is there a. Amount of information being exchanged today that carry quality announced. Transactions between the participating networks and carry quality, not the transaction logs in tra network, 310 million CCDA is exchanged in the month of January alone.

So if you layer that with the other transactions for query or patient discovery, Is eclipsed the worldwide transaction blends of the swift network. So there is just a tremendous, I would say that is sort of the foundation for treatment. And of course, TEFCA is building off market capabilities and then expanding further to support more modern standards like fire.

Wow. 300 million.

310 million clinical records exchanged in one month.

Wow. That's a, yeah, that's a significant amount. And when you say CCDs at this point, or are we still talking the same? Old format that I remember where we had to parse those things and do things. Are we seeing discrete data elements come down and flow in yet

much more discrete data is available yet much, much more. It's a fault a lot again like anything it's, it's, it just takes a while to mature standards. And again, through testing and building a workflow and the vendors have had, and providers have had a lot more opportunity to experience to enhance that. But yes, there's a lot of discrete data being exchanged.

All right. So above compliance, because a lot of, we have a lot of stuff going on in healthcare. You might know that. I mean, we have a nurse shortage, we have a lot of things going on. Sometimes these things are top of mind. In fact, they usually don't ever get to number one. They're usually somewhere in the top five, but they just never bubble up to the top one.

And obviously we had a pandemic for two years. We have a staffing shortage going on right now. if we were to think beyond compliance, what would you like to see from healthcare delivery providers and in that space to advance interoperability around our nation?

I think that beyond compliance and what we do need to see is increased participation in health information networks. That's the only way interoperability is going to work is if you participate in a network. And so whether that's an HIE or some other national network or some other mechanism having broader participation, not so much from the health system perspective, but for providers across the continuum. There just means to be enhanced in that regard. The other part of it is having a willingness to share information or request information through that network for other purposes, as we roll them out for payment and healthcare operations, you can imagine the sensitivity of a healthcare organization releasing a summary record.

For their patients to a health plan. I mean, there are concerns about that. So what we're doing to really allay those concerns and to get is to get much more specific. What is this use case? What are the data set that would be appropriate? Are there additional policies and expectations that isn't make it such a blanket request and release?

So I think that's the next opportunity, as well as a willingness to share information to industry. For their own right to access their information and we recognize their issues and challenges around that. We're working with policy makers to provide some, hopefully some guidance that would appease concerns that if you a healthcare organization did a patient matching error rates accidentally sends the wrong person's record to someone that they're not going to be in violation of HIPAA. So those are kind of the practical things.

But that brings up two things. One I want to talk about for payers and the second, which a lot of providers are becoming payers, payers are becoming providers. It's kind of an interesting world we live in. And then I also want to talk about patient matching, but really a patient identifier within the system. Let's start with the payers are involved, are included. And the 21st century cures act. I think it was on a different timeline though, than the, than the providers aren't. Are those starting to get matched up a little bit or is it still a year apart from each other.

It's still hard. And that's the other opportunity that TEFRA really brings to bear and that in terms of reaching the next level of interoperability is having payers be more active participate. In clinical health information exchange, they need the information you're scrambling to get about working with vendors and organizations individually bringing everyone into the fold is really impactful in that regard.

and I would assume. Well, I actually, I don't even want to go down that path because I know but it's I remember early on in the days of interoperability and I used to sit across from physicians and they'd be like, I don't want to share the information because of competitive pressures.

And they had to educate me on the competitive pressures in the more they talk, the more. I think that's unfounded. Like, I don't think there's a physician practice over there with the it skills and the and the time to like mine, our records for patients. And if they did, there's a thousand other ways that are so much easier than mining our information to get access to that.

And at the end of the day, every provider and. Has information different sets of information on that, that same event. So I, I'm not, I don't really buy the competitive nature. I understand where it comes from on the EHR provider, but I do not understand a payer provider. And I'm sure somebody can educate me on over that comes from let's talk.

Patient matching let's talk a national patient identifier. Clearly there's a big push in, in this country for that. There's some privacy concerns around it, but when you're talking about sharing records like this, you have to match them at some point. So what w what's, what's the current approach to this? What's the current thought on this? let's just talk about, what's currently in place of what you're working with.

patient matching of course has been a barrier and a challenge for ever more than a decade. I mean, it's just

within our four walls. It's

exactly. Exactly. So when you extend that further to try to match identities between completely different the patients that are otherwise unaffiliated, the issues are even further exacerbated. So we actually did research a while back in conjunction with Intermountain healthcare. They did a case study about what it, what they could do to do to improve patient matching. And so they actually had a shared set of patients between in HIE, in the community and, Intermountain healthcare.

And so they knew that those patients should match cause they knew they had. At a defined set of shared patients and that's what they tested and they had horrible match results. And when they, and when they initially started trying to correlate the identities and it came down to a data issue, not surprisingly those inconsistency and the identity traits in which they were formatted and expected.

And so one was using us postal service, formatted address, and someone who was using a different format. And then there were other rules and data cleansing and getting. Just better data quality. So we wrote a white paper on that a number of years ago, we'd like to update it and further expanded on that with some research that we did in conjunction with the blue cross blue shield association.

And the interesting thing is if you have a secondary identifier, such as a social security number, the match rates go up to 99.9%. And so which begs the question. Do we need a uni Pash patient identifier, or do we need to revisit decisions like that about maybe what is, what are we all setting the risk to patient safety, the risk of potential breaches of the wrong information to share versus Someone's privacy per you're being breached.

And so there's probably some more updated thinking. We're starting to think through that now, but what could we do to sort of advance that recognizing any patient ID is going to help some, but it may not it's probably going to be a small set of of individuals that we can't get to otherwise in terms of accurate matching.

Yeah. It's, it's not a silver bullet. When I was again, Southern California, 16 hospitals and one of the things that happened. Was, we had a significant number of undocumented people who didn't want us to know their information, but there were still commonalities in the dataset that would tell us, Hey, these two people are the same people.

And for our own purposes, we did some we did some data work on it to see if we could match those patients. And to be honest with you on, on, we were able to match those patients pretty well. with tertiary data that they were giving us the wrong name. They were giving us no social security number.

They're giving us the wrong address. They didn't want to be contacted. So like all that general demographic you just throw out and you have to start over. There's ways to match patients. I don't know what the ramifications would be on a national scale, but on a local scale, we had to do that in order to provide the best care for those people who kept using our, our ed is the place they kept coming to.

that's really interesting. I do want to talk about the patient. A little bit in this because the 21st century cures act is really at the heart of it. I think the reason it's my partisan is the benefit to health and the benefit to our communities. And so the, the patient hasn't been engaged. Is there a vision for how the patient gets engaged with this data? I know we want to see health systems have the information at the point of care, and we want to have the right conversations with people when we get on the phone and all that stuff. But what about me as the patient? Having my data somehow and engaging in my health

just a fantastic question and you're right. I mean, a very much at the heart of 21st century cures and TEFCA, acknowledging that we have to do more, to make it easier for individuals to, and caregivers to get access to information, to their own information. And so inflammation blocking is compliance rules. That's one. Stick that if you're not sharing information and you don't have a legitimate reason for not doing so that there are consequences for that.

And then TEFCA has an obligation that if you're participating in TEFCA, then you have to respond and share a person's information with them unless you're prohibited by law from doing so. And that sets a very, very specific bar. So we're building, we have the policy, we have the technical capabilities to do.

So why is it not happening? Well, one is, I think you did note that consumers are, they sufficiently educated about their right to access the information. Do they understand what can be done with their information? Are they understand the consequences of that and then how do you get them actually using those capabilities?

We have to have information available for people to use the service. And that's the challenge we have. And it's not a technical issue. It's not a legal issue. It's a policy issue that again, dovetails in this whole patient matching challenge, that if you accidentally released the wrong record to someone that you are in violation of HIPAA, there are concerns and that's impeding providers from, from doing so And so actually, in addition to that, we also realized that we do have folks involved in the interoperability dialogue that represent the perspectives of consumers because of the services they provide or maybe their their own personal experiences.

And they're really held it insiders, which is so, so, so valuable. We realize that. And we really understand other challenges for people across a very diverse socioeconomic backgrounds, cultural backgrounds and different ethnicities and age groups. Do we really have a venue to channel. And we didn't really see anybody really doing that.

So we are launching a consumer work group that will underscore and look into the challenges for them to get their access to their information from a multitude of perspectives. That's not really solely from through the lens of a health it insider, which is important, but really from the average person and how do we make this understand? How do we make an understandable, so that they can be more, have greater health literacy and overcome this barrier. So I think there's more work to do there, honestly,

when we sit around a conferences and, have drinks and we talk about what the future could look like. it's interesting. Cause the place I always take is patient-centric interoperability and people look at me like, what, what are you talking about? I'm like, The record to revolve around me. I'm the, I'm the constant at the point of care, I'm going to go the next place. I'm going to go receive care. I'm going to be there.

If I decide to go to a nutritionist, I'm going to be there. If I decide to go to a whole person healthcare organization, I'm going to be there. And I'd like to have my record blue button style, like press the button, download it. Have a little barcode. I walk in. They scan the barcode. They have my record in a way they go I always take it one step too far.

And I say, when I leave, I want to take my record with me and I don't want them to have it on their system because I know enough about security to know healthcare. Hasn't secured my record. I've got way too many. Hey, here's your, your information has been hacked. Here's your your. Privacy protection and those kinds of things.

And that's when people look at me go, oh, but what about? And I'm like, look, we have to believe in the goodness of people. People want to help other people. If you gave me my record and said, and gave me a nice, easy system where I could say. Hey, would you like to provide your data to the American cancer society?

Yes. Would you like to just provide it to, yes, they wouldn't have to pay me. I would be like, I feel good. I'm just clicking these buttons and providing it to these people who are doing good research. Instead what's happening to me as you have these organizations who say, well, we've got all this data, this is really valuable.

We're going to aggregate this data. and all these health systems are coming together and my data is in it. And I haven't been asked and it's now being monetized to the tune of a multi-billion dollar entity. That's gonna the benefit then. And again, I'm fine with my data being used in certain ways, but I'm not being.

I would really much rather see the patient finally get empowered. This is, I'm just using the tail end of my show to, to rant a little bit here, but I want to, what I want to give you the opportunity to say is, let's assume we work out a lot of those things in five years, I'm going to be kind, because I know every time I say a year, it's usually double that. But in five years, if everything goes well how might our health system look different? If we get interoperability right.

I think it could be really game changing. And we are seeing that there are apps and service providers that are providing the type of capabilities you're talking about. For instance, making it easier for an individual to be the control center for their information and in, in authorizing release of it for research and whatnot.

I think that what we'll see is that. There'll be a maturation of apps and other platforms that individuals are using. And that when it's like anything, when you have some folks who are actively using, and they're the early adopters, as it's like the whole it cycle. And then you get people that may be laggards and then come into the fold and then maybe there are certain people that just never participate in that.

But I mean, you got to have some critical mass of apps and platforms and use of it to really see that. And it'll gain momentum, particularly you think about millennials. I mean, they're chomping at the bit to get that information. And I think that the policy space will evolve as well to account for that. And in TEFCA, we actually it was really important that at providers that provide individuals, ax a platform to access their information that they're held. To the same standards of HIPAA, that they have certain obligations around privacy insecurity and, and obligations to provide notice to the patient and get consent. And so we're starting to see policy catch up with that a bit too.

Yeah. The other I'll close on this. The other thing I've heard now is There's not enough demand from the patients for this. So why are we doing this? And part of it, I tried to describe this as like, as a patient, I don't even know what to do. I don't know who to go and rally around. I don't know who to demand. I I've gone to some of the companies I know that are doing this. And they say, oh, look, we can, we can gather your record. And I launched their thing and it says, okay, where do you have a record? I have adhere. Okay. Log into my chart. We'll get this.

Where else do you have a record? So I have to, first of all, remember. Where I have a record. And to be honest with you, I can't remember all the places I have a record. I've lived in eight different states and and I I've probably been in the hospital and all of them, so it's it's so I sorta looked at that and go what's, what's the chances of me not having a full longitudinal patient record.

It's probably pretty good. But that's probably the case. I think the question I want to ask you is I've had people come to me and say it's for someone who's my. It's one thing, but what about this generations being born right now? Can we get ahead of this so that their records are all brought together from now until the time they're my age.

Oh gosh. Wouldn't that be amazing? I know there are certain HAES that have that capability and that they actually have information from any different sources and they normalize it and have this beautiful longitudinal record. And it's the exception, not the, routine available possibly. I think so because and again, it could be enabled by evolving. Technology approaches and whatnot, and also the ability to have imagined savvy consumer that actually has access to their information. And they're creating demand that that's what can I think, advance the bar having a longitudinal record for people being born right now. I don't know bill. That's a, that's a tough one to answer. I love the idea.

Yeah. Well, I had a couple of questions that I sourced from people and they all really centered around the things that are keeping us from making this happen. Is there anything that's keeping us from making this happen today that are the roadblocks that are, difficult.

There are a number. I mean and this is real world in which we live every day is why is this so hard? And part of it is we need some real focus and there are so many issues and aspects of interoperability that we need to unpack and try to fix. And that we're not going to be able to do everything all at once. And so from where we sit, how can we tackle one problem at a time? And what are the biggest challenges? I'll tell you this data usability issue. The central, because to do anything, we talked about anything even for big data and tech companies and and for research and all that, if you don't get good quality, complete data, or if it's not codified in a way that's usually or usable or understandable, then we're really, we might be moving a lot of data, but if it doesn't have our value in the end use of it we've failed. And that is a long game for us because that takes a lot of engine in not only defining the expectations from an end user clinician perspective and individual perspective or whatever, but you have to get again, go back and change technology and do some re-engineering and workflow and training.

And so I think. Everything we discussed, I think so much of it is solvable the data usability one is a heavy lift and it's one that we certainly are going to stay focused on for some good long time.

It's so interesting to hear you talk about those things. Cause that's the last couple of months, I've done a lot of interviews, a bunch of conferences and whatnot. And the thing I'm hearing from health systems is Hey, this AI and machine learning thing is bringing up a whole new set of problems with our data. Like, like we thought our data, we cleaned it up pretty good. We've gotten to a good point. We've been doing these optimization projects and now we realize we have to go through another level of optimization in order to create good data to be used in our models. And I'm like, that's what they're saying again, within the four walls. And so you're looking at.

That's right. That's right. it's a big lift, but I think that having much needed focus and building and lessons learned and being incremental, recognizing we're not going to solve all these issues overnight, but let's, let's stay the course and let's really make that incremental progress. And then time, I, I think in really five years time, and even beyond we'll start seeing real strides in that regard.

Well, Mariann, thank you very much for coming on the show. I appreciate it. I love the work that you guys are doing. Appreciate the progress and happy anniversary. Of course, to the square project. Look forward to catching up with you again, as you make progress, this is, this is coming down the pike pretty quick. Isn't it?

It is. It is. I think we'll see more here and then your future on Teka and, and thank you so much for inviting me to chat with you. I've enjoyed it.

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