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December 26, 2023: Mariann Yeager, CEO of The Sequoia Project, Aneesh Chopra, co founder and president of CareJourney, And Mark Knee, Deputy Director at ONC, delve into the intricacies of healthcare data interoperability, discussing the transformative potential and challenges of the Trusted Exchange Framework and Common Agreement (TEFCA), and its impact on healthcare data sharing across different networks. The conversation highlights the remarkable progress in EHR adoption and the ongoing efforts to bridge gaps in the U.S. healthcare system. The panel also touches on the critical role of AI in healthcare, exploring how it's reshaping data usage and patient care. As we contemplate the future of healthcare IT, one must consider: How will TEFCA's evolution influence patient data accessibility? What are the real-world implications of AI integration in healthcare data analysis? And how will these advancements redefine the landscape of health information exchange?

Key Points:

  • Clinician Efficiency
  • Ethical Implications with AI
  • Healthcare Data Sharing
  • TEFCA Implementation Challenges
  • Soothing AI Worries 

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Transcript

  This transcription is provided by artificial intelligence. We believe in technology but understand that even the smartest robots can sometimes get speech recognition wrong.

Today on This Week Health.

(Intro)   To say, you have your business model, we have our business model, and we can make it work together, and you can still be competitors, but still work together for the greater good.

  Thanks for joining us on this keynote episode, a this week health conference show. My name is Bill Russell. I'm a former CIO for a 16 hospital system and creator of this week Health, A set of channels dedicated to keeping health IT staff current and engaged. For five years, we've been making podcasts that amplify great thinking to propel healthcare forward. Special thanks to our keynote show. CDW, Rubrik, Sectra and Trellix for choosing to invest in our mission to develop the next generation of health leaders. Now onto our show.

(Main)  All right, get started. do want to thank everybody who's joining us. Really looking forward to this discussion I want to thank our panelists and I will reintroduce them in a second. I want to encourage you, go ahead and ask your questions in the chat.

I will tell you, we've already received like 40 some odd questions ahead of time when you filled out the form to join. Bunch of people have dropped questions in, so we're going to bring those into the discussion as we go along. That's how we keep the discussion relevant to the things that you want to discuss.

Again, we have Marian Jaeger, CEO of the Sequoia project. Anish Chopra, co founder and president of CareJourney. And Mark Knee, Deputy Director, Interoperability Division, Office of Policy. in the ONC and for those of you who joined late, Mickey Tripathi was unable to make it, so Mark has graciously stepped in to fill that bill, and Mark, just to have you set the stage given your role in ONC's, Office of Policy focusing on TEFCA, provide us an overview of how TEFCA is shaping the landscape of healthcare data interoperability.

in the U. S. What are its primary goals and potentially what's the current status? Yeah, thanks, Bill.

And I could talk about TEFCA for quite some time, but I'll try to keep it short because I know we have a lot to get through here. But, just first, thank you again for having me on.

I know many were probably looking forward to hearing from Mickey, but I'll do my best to fill in for him. Let me start by setting the stage, a little bit more broadly than TEFCA. And then I'll try to get into why we at ONC think we really need Tefco right now.

So the United States healthcare system has been on, a path to being truly digital for over a decade as I think most know. And, through the passage of high tech in 2009, and the launch of the Medicare and Medicaid EHR incentives programs and the passage of cures in 2016.

We've made tremendous progress in the use of standards and supporting

And, just to throw out some numbers, as of 2021, nearly all non federal acute care hospitals and nearly four and five office based physicians have adopted a certified EHR. This is really great progress since 2011 when just 28 percent of hospitals and 34 percent of physicians had adopted an EHR, and a lot of this is, there's policies that ONC is supporting for API standardization to simplify information sharing between EHRs.

And, all of these great initiatives are spurring the next phase in the decade long investment in health IT. so Lots of great progress. And, in the context of TEFCA talking about, health information networks and health information exchanges, there are great nationwide networks that are currently facilitating secure exchange of millions of records every day.

And there's also state and regional, HIEs that provide localized interoperability services in many parts of the country. All this to say is that, there's a lot of really great stuff going on, especially over the last decade, but that's where I'm going to shift to say, there's still a long way that we need to go.

And that's where I think TEFCA... Comes into play because there are these significant gaps networks across the country are not all seamlessly connected and do not consistently address a range of exchange purposes. And one thing TEFCA does is it expands the exchange of information beyond treatment, which is what you see primarily in exchange right now.

HIEs and HINs, and it has six exchange purposes. And while the nationwide networks have made considerable progress, cross network exchange is still not by any means. And, most large health systems are connected into health information exchanges or health information networks.

But many small providers, such as the ambulatory and post acute care providers, have limited connection to exchange services. And, I don't want to see, it's really important to us that we don't let those folks get left behind. Let me shift to TEFCA. The way we see TEFCA as a game changer here is I'll give the example that we give often, is that you look at telecommunications and you pick up your cell phone and you dial a number and it just goes through, it doesn't matter.

If you have Verizon and the person you're calling has T Mobile it just works. And that's not really how health IT is right now. And TEFCA is a vehicle, we think, to help achieve that kind of interconnectedness and interoperability. As far as the goals of TEFCA the overall goal of TEFCA is to establish this universal floor for interoperability across the country.

And, I think, thinking about patients and providers, one really significant piece of TEFCA is that it will Reduce the number of connections that individuals, health care providers and other stakeholders need to make to get the health information they need, where and when they need it most.

tHe structure of TEFCA, for those not too familiar, it's a network of networks, so it's connecting. Different networks and there's this base level of trust built into TEFCA where you have common terms that need to flow down to everyone involved in TEFCA to create this level of trust, and those are the required flow downs in the common agreement, and it was really important to us to keep building on all of the work that these other networks have done in the past.

It's important to note that TEFCA supports existing health information networks and aims to expand and improve on the access that those networks created. Just real quickly, I know I've been talking for a little while, but, as far as the value of TEFCA, I noted the exchange purposes, but I also want to note that, We've heard from stakeholders that the fact that it's supported by the government and funded by the government makes people feel assured that it's going to be around for a long time and we're going to keep building it.

So even though some people, might cringe at government, I think overall we've heard that it's a really strong Foundation for will make sure that lots of folks want to come in and participate. As far as the status goes, there are a couple things I just want to highlight. If I'm going to, if you remember one thing I say, throughout my remarks today is that TEFCA going to go live in 2023.

This year, actual information will be exchanged through TEFCA, which is extremely exciting. We've been working so hard with Mary Ann and her team who have done amazing work with TEFCA. And there's seven candidate QHINs who are going through testing and onboarding right now. And there's more on the way who have submitted applications or who have expressed interest in submitting applications.

And we're also working on updates to the Common Agreement, including those that will enable FHIR based exchange, which is a huge priority for our office. So I'll stop there and just say a really exciting time at ONC

and for TEFCA. Fantastic. I want to come over to you and, from your vantage point, from your lens at the Square project, what does the evolution of interoperability over the past few years look like?

Again, we're just trying to set the stage. We're going to talk about the possibilities and the potential, but, what does the evolution look like? From, what you've been seeing from your vantage point at the Sequoia project. wE've

really seen a, an incredible maturation of interoperability capabilities over the past decade.

So you think back to, Circa 2009, most of healthcare wasn't even digitized, and then finally digitized. And then it was a matter of getting the providers primarily connected to health information networks. What we've seen over the past, say, 9, 10 years or so is that now many providers are connected to a network.

And, the private sector really came together through an initiative that we sponsored called Care Equality to have those networks interconnect with each other. Those transactions started in 2016, and by 2019, I think there were collectively 1 billion clinical documents exchanged in 2019.

And today, I think it was just last month, 500 million clinical documents exchanged each month. Now that's principally for treating patients, which is great. So we're probably starting to see in our day to day lives that more information is following us from all the different places where we receive care.

And I like to say that, We finally have indoor plumbing, but the water isn't always potable, right? So now we have a big data quality issue, a data usability issue. And now that people are starting to rely on it, there's a greater demand and need and impetus, I would say, a call to action, so to speak, to make improvements in that regard.

But what I think we have is a solid foundation and a community that's really committed to doing this. And so being able to have TEFCA leverage that momentum and expand it beyond that to support new use cases, to bring payers to the table who've not been participating in clinical information exchange so much, and to support new use cases, payment, healthcare operations, and importantly, to make it easier for us as individuals to access our information is really a promise.

And that's really, we're able to get to that. accelerated state because of the foundation that's been laid over the past 8 10

years. Fantastic. Anish, I'm going to come to you. I think every time we get together, we talk about this topic setting the stage again is from a technology and an entrepreneur perspective.

Where do you see the biggest gaps and opportunities in healthcare data interoperability?

Right now, the single biggest gap is a failure of understanding how to use all the machinery we've put in place. If I may, 📍 to rewind the tape on that bill, There were like three assumptions that I'll set the stage on that we can look at what happened in those assumptions.

Assumption number one, when John Glasser came to advise us at the very beginning of the HITECH Act, He's look, I've had an EHR, Mass General, Forever, Legendary, Godfather, right? We all are disciples of the legends. John shared that he could not run a query of getting a list of patients who smoke.

At the time, we were launching the Million Hearts campaign. could, if we could identify smokers and get them through smoking cessation, and we could do sort of a few other things, managing blood pressure keeping it under control, we could reduce a million heart attacks. And an animating principle, As we got started was whether or not we were simply giving people a Best Buy voucher to go buy software as is.

and adopt. I think, in Mark's language about, going from low to high adoption, maybe the buried headline is that we actually shifted what does it mean to have a electronic health record? The meaningful use term was critical. Now, We'll go back to this, we get later did we overshoot the mark, but we basically said, look, we're going to require certain aspects of data sharing because we know they're critical to a future of value based care.

The demand signal for value based care wasn't quite at that moment, so we had to land a triple axel. Category one is we, had to have a little bit of a shift in what the capabilities of the technology were. Maybe a little bit different than what the market was immediately wanting.

Number two. We had a critical assumption, which is that I was in Virginia, state government, before I went to the administration, and we had two of the four NHIN networks, and we observed very clearly there's a strong desire to build networks that are B2B. But if we go into the core principles of HIPAA, I have the right to my data.

There's no argument. There's no contract negotiation. There's no BAA, treatment, payment, and operations expansion. It's a fundamental right. So it was pretty clear early on that we needed to have an architecture that would support rights. And so we had essentially two regulatory roadmaps. One that was sort of the trust frameworks on the B2B, and then two kind of simplifying consumer access.

And so those roads in this kind of door two kind of essentially forked, and we're now entering a period of convergence. What did we do, and why do I say that the biggest gap right now is a lack of awareness of how to use the very knobs and dials you've been given? Let me connect the dots. Number one, when we had to do the patient facing model, we had to standardize the data elements at the data element level, not at the document level.

That meant we forced mappings. from proprietary databases in each of the siloed fragmented EHR systems into a common open data model. And to HL7's credit, they were the first standards body in healthcare to open source the data model. So now we have a common language, the FHIR data model, separate from the transaction layer, the data model, that became the standard that ONC certified and regulated.

And now, thanks to the Cures Act, as of December 31 of last year, I think at last count, Mark, 290 certified EHRs have met all of the requirements to map their proprietary data into U. S. CDI, into the FHIR data model, and to make available three access methods. One for the patient, one for the provider, I'll call that the all you can eat buffet or the smart on fire backend services scope, and to marry ends.

Hope, or my hope for Marianne, a network access layer, which is built on something called bulk FHIR, which allows you to be a lot more pragmatic about with whom you're sharing for what use case and how to manage those controls. So Bill, this is a long winded setup to say, the question you asked me, what's the barrier?

It is today, October 5th. I can count on one hand how many production use cases are live, tapping the regulated Cures Act FHIR endpoints for network or bulk or partner data sharing. That's not a technical problem. The EHR systems have certified. It's a training problem. The average number of CIOs who have actually even looked at their G10 certified is abysmally low.

And that is not a function of standards technology certification. That is 1000% Training. Do I have from my EHR vendor the instructions manual on how to organize it so that if Marianne's networks want a key to my bulk FHIR server, here's how they can administer that key in a safe and secure manner. Am I giving Marianne the all you can eat buffet key?

I don't think so. I think I give Marianne a key that's built for purpose, and I may give Marianne 50 keys. So Marianne can understand, ah, public health use case, this is how you organize it. Ah payer provider quality measurement, ah, here's how you do it. And so you can imagine a network model that puts these pieces together.

But that's not a technology problem. That is an understanding of how to create these keys. I can go to the hardware store and they can make me a bunch of keys. And it's not that complicated and it's not that expensive. The machine works. Every certified EHR system has shipped that machine to their customers.

We just have to be trained to use it.

Which is interesting, there has to be an alternative, right? They're not tapping into it because they're doing something else. It's...

Yes, they're selling proprietary connections through third party middlemen that have fees up the yazoo from every hand in the cookie jar because somehow, Bill, that's the more efficient and effective way.

Forget the regulated public option with clean, pristine, certified data. No. That's too nice. We can't have nice things. We've got to go to five vendors that do the chart, that do the this, that do the normalization, that have a mention. That's

where we are. Wow. So you're saying there's a cost benefit that these health systems should be taking advantage of that they're not right now.

No. Health systems in this case are the supply side. For them, it's annoying because it's something they haven't learned how to do before. So they'd have to incur staff training to accrue benefit to the third party. So public health benefits. In a more cost effective way to get signal of reportable conditions.

But is public health paying doctors and hospitals more money to help give them a signal for this information? No, it's a mandate. in a legacy HL7v2 format, and they haven't upgraded the mandate to involve a FHIR format. Or, you do quality measurement. I can give you the FHIR data, but oops, it's not considered standard supplemental, so the auditors in Medicare Advantage don't approve it.

I'd rather have the legacy data converted 15 times. To get to an auditor to say you are allowed to use this to say that my blood pressure is under control. So until we knock down these use case barriers, we're really not going to see anyone see the benefit on the supply side of sharing.

So let's get two of the participant questions in this area.

And feel free to raise your hand, any of you, to answer this. The first one is, what are the most challenging valuable use cases where interoperability can bring value, and this is specific, bring value between payers and providers?

I can start with it, and I think Aneesh, you just said it so beautifully, because the capabilities already exist today to do much of what we've been talking about, and It's an issue of training.

It's an issue of understanding and having enough specificity and that people understand how to implement and that there is also trust. And how that is and how exchange occurs. And I think that's something that a TEFCA in particular can facilitate. We've done a good deal of work looking at different use cases with payers and providers.

And I think what, we try to be really, and this is with TEFCA, what I'm talking about right now had a lot of extensive outreach with payer community, provider community, and other stakeholders to get feedback about what's that sweet spot. And so we did identify some, specific, use cases that were pretty granular and folks said, yeah, that's too narrow or, and so I think landing on a more generalizable description of a certain type of healthcare operational activities that are pretty well understood and customary and that's what we think is going to be a good jumping off point for TEFCA.

I don't know, Mark, do you want to add on to that? Because I know you've been working with the team on it as well.

Maybe just a more general statement about what you're saying, Marianne, and how important it is that there's incremental change. I think, Anish, when you were talking, it really, resonated with me because with TEFCA, especially, and all the work ONC does is you really have to connect the tech with the policy.

And with Tefca especially like Miriam said we're trying to expand the use cases. We're trying to expand how the information will flow. But we also are really cognizant of what the public has told us and said, don't go too fast. So don't try to do too much too fast because you could really set things back.

And that's one of the reasons why when we're rolling out Tefca, we're only requiring responses for two of the exchange purposes, treatment and individual access services. Because, like Marion said, with payment and healthcare operations and public health, it's a little more complex and really working with stakeholders to make sure that they have proper input on our process and make sure that the use cases we identify are the ones that are pertinent to the, the broader public.

Yeah, Mark, if I can just piggyback on that, I'm obsessed with the TEFCA FHIR Roadmap you published in January, you and Marianne, and if I read that document the way I am excited to read the document, and you may tell me I'm reading it wrong, there are three stages to the TEFCA FHIR Roadmap. Stage one is I'm gonna call this the Goldilocks analogy, not too hot, not too cold.

I'm gonna call stage one not too cold. And what that basically means is take the existing exchange, CCDs, unregulated source documents, convert them to FHIR, and then pass them along to the network. I don't really like that stage because it's adding cost and the data quality sucks. So that's a double lose, but I understand that's in the roadmap.

But stage two, is facilitated point to point sharing. That allows us to create, I think in Mickey's terms, a QHIN sub network that allows us to run experiments in a trusted, secure manner that unlocks all the use cases, but in a tightly defined environment. As an example, back to your public health statement, there are five health systems that are sharing a bulk connection with the ONC funded LEAP grant led by Ken Mandel at Boston Children's.

And in that experiment, it is a facilitated point to point connection. Now at that moment, Marianne, it's not operated by a QHIN or a QHIN applicant, but it could. There's no reason why it couldn't. And so that is a place where you could expand use cases, structured, organized, facilitated. Of course, you could tell in my Goldilocks analogy, that's just right.

Stage three is a little complicated, big brother in the sky, all the medical records are in one cloud, and we're going to be able to query it and share it. I think that's a little bit of a dream and maybe honeypot for bad things, and so there's a little bit of, ooh, that may be too hot. So in the not too hot, not too cold, right now, there is a chance for the community Payers and providers that are looking to expand to TPO, while the networks may not support a nationwide rollout of that until X date in the future, this afternoon, we could get half a dozen payers and half a dozen providers under the guise of a QHIN sub network and be part of that stage 2 facilitated FHIR point to point exchange and demonstrate the value of all of this work.

Fingers crossed. In February, at DataPalooza, WowzaPalooza was the name of the blog at ONC, Undersecretary Sharif El Nahal said, I'm going to reopen the OpenAPI Pledge. I'm hopeful that any day now, the VA will announce its initial roster of partners. Which could be, under this guise, a facilitated kind of sub network to do the kind of data sharing when veterans get care in the community and all the rest.

I don't know where that fits, Marianne, maybe you can tell me that yes, that's right, or ooh, that's wrong and that's bad, but I feel like we can walk and chew gum at the same time on stage two. Yeah,

I think we're definitely getting there. With TEFCA so we do have to, in addition to the standards and the technical side, so we do have a FHIR implementation guide that has been tested out.

We do know a number of the candidate QHINs are already gearing up, getting ready for a 2024 rollout. And so it's not going to be an experiment.

That's if the FHIR IG that you've got maps to the current Cures Act standards. I don't think it's the direct fit, so there's a little bit of a chicken and egg, which is...

Yes,

there's a little alignment that's taking place there.

we have to be MacGyver, Bill. What would MacGyver do? You would take certified EHRs that have G10 capability, you would have basically standardized clients that could be interrogating the systems, and you'd have networks that would facilitate that sharing.

And then in

addition to the standards and technology where TEFCA comes into play is that trust element of it and having a trust agreement that covers all the rules and conditions and rules of engagement that can right now it was the first version was crafted really more in a document based exchange approach.

It's being revised as we speak. speak to support FHIR based exchange that really needs to be in place. We're working on a very aggressive timeframe to make that happen. Once that occurs, then we're really moved to that early stage rollout. And I think that's what's so exciting that Tefco will help elevate, amplify and again, align with these other capabilities.

Mark, I think you were going to weigh

in. Yeah, I just want to echo what you said, Miriam, and I think, Anish, the way you were describing the FHIR roadmap sounds pretty accurate to me, and just to echo what Miriam said is that FHIR is on the top of our minds. It sounds like you've talked to Mickey a decent amount, and Mickey is all for getting FHIR implemented in TEFCA as quickly as possible.

That said, incrementally, so that we're not pushing too fast. But, like Marianne said, we're working on updates to the Common Agreement that we, I don't believe we've set a date yet when it will be out, but in 2024, early 2024, we're aiming to have. A new draft of the common agreement that would implement FHIR based exchange facilitated FHIR based

exchange.

one more question from the participants who are tuning in. What are the immediate term benefits of TEFCA over care quality and regional HIEs and half dozen other things that I could rattle off there? What are the immediate term benefits of TEFCA over those other solutions that are out there?

I think I can take a start at this. First of all TEFCA is not looking to replace what exists today. It's, in fact, building off what exists. And today in CARE Equality and through the CARE Equality implementers, there are a significant number of HIEs connected, and so that will continue.

There is a significant parallel and Scope between carry quality and TEFCA. And so again, aligning those and the players are often the same as well that they'll coexist for some period of time. I think where TEFCA is really going to take off is again, supporting these new use cases elevating and implementing FHIR based exchange.

So they're not either or, it's and it's additive. A lot of what we've been able to bring to bear in our role as a recognized coordinating entity in TEFCA are the lessons learned and, all those experiences that we've had with CARE equality, and again, with the government endorsement approach and this broader aim and strategy again can take it to the next level so they're not either or it's and.

Yeah, let me take this and I'm going to take it in a technical direction. I just spent the last three days going deep into AI and healthcare specifically with a group of people. And it's interesting that, the technology sits on top of the health system and ingests all this information from the E H R.

It even uses r p a to ingest information from the payers. It ingests information from, you name it, just across the board, various systems. And it was interesting to me to see a Google-like interface. where you could query it, and it was responding back with, it's using NLP, it's using OCR, it's using all these technologies to ingest it, and I'm requesting this information, and all of a sudden it's delivering back to me discrete data elements that were pulled out of all these documents and whatnot, and that wasn't hand coded in and those kinds of things. curious, as you're making this progress, and you're looking at the future where AI is, Maybe changing some of this landscape. How is AI changing the discussion and how is it changing the thought process? Anisha I'll start with you had the VIC

20. I will just say, I was an analyst at Morgan Stanley in 94, 95, and my colleagues on the, I was on the healthcare team, the tech team took Netscape public.

And from that moment on, I was like obsessed with the idea that the Internet would be a foundation platform for good. And I've basically dedicated the last 25 plus years of my life to unlock the power of the Internet in health and energy and education, the things that I've been deeply passionate about.

I am more excited since November 30th with the release of ChatGPT. This is like a productivity revolution unlike we've ever seen. And I can tell you, funny enough, like interoperability is highest and best use, you're going to hate to hear this, but the reality on the ground is the highest return on economics for interoperability or Medicare Advantage risk adjustment.

And number one, number two, number three, and number four use cases that have a huge return are, oh my goodness, I've got a new patient who happens to be in Medicare Advantage. Or, I've got, an ongoing patient that's been to other parts of the healthcare ecosystem. Let me tap the networks. and organize all their records.

By the way, we have to acknowledge sometimes we get duplicates back and they can be 35 page PDFs and whatever the dynamic things are, that's the reality of what gets transmitted. And if I have a safe and secure trusted machine that can help me interpret that information and pull the most relevant information to help inform my treatment plan, that has a great deal of value.

Now, that's TPO. It could be treatment, but boy oh boy is this going to be one of those super controversial issues, Bill, because who's asking? Who's authorizing? What are the use cases? I'm not legalistic in my understanding as to what is allowed or not allowed on the networks, but that is if you wanted to say, what's the hot knife through butter use case?

It is an under diagnosed patient that's got broader understanding of their background needs that could be brought to bear in that clinic visit, and in Medicare Advantage, that is a very valuable activity. Good? Bad? Societal advancement? We're having a huge debate. Should Medicare Advantage be less relevant?

We're going to adjust down some of the heat on how much you can get in terms of economic returns on the investment, but it is still nevertheless. A big gap. We massively under diagnose so much of the disease in this country. So the dream bill is we accurately diagnose the disease, we monitor disease progression, and oh my goodness, reward doctors who slow down disease progression relative to their peers, so we actually have a healthier...

Society with better longitudinal outcomes. And if it means doing more to diagnose accurately on the front end, so be it. I will make one statement about this use case on the AI front. And by the way, Bill, I wouldn't go so far as saying people are deploying this on their medical records today.

If there are, I'm not that privy to it because I'm deep on this issue right now and people are scared to death because no one quite knows exactly how to do that. They might have had a traditional predictive AI model in their bill, which they've been working on for years. But in terms of actually unleashing the LLMs on medical records, ah, not yet.

More likely, you're allowing the, the capabilities. to be deployed to interrogate the data, write queries against the data. That's more of the slicer dicer EPIC announcement with Microsoft, where you can have a human or an AI write the query to answer the question, like the professor, the doctor in Flint, Michigan, that used EPIC's EHR to find, the fact that all these kids were suffering from this terrible disease.

Which led to the water crisis uncovering. So instead of a human doing that kind of investigative journalism, you can almost have a a kind of an AI do that for you. Bill, I think we, we should be acknowledging there's like current LLMs, not trained on healthcare data, trained on the internet.

You can expand it into querying your systems. And then we're going to have some hopefully well regulated, understood model that allows us to put the full power of a linked longitudinal record system to help with questions like disease progression and the like. We'll get there, but that, I don't know if I would say that's at scale.

Yeah, so there's an interesting participant question here about financial incentives, and sort of curious with this as well. I know that there are some, who can give me a layout of the carrots and the sticks that exist for health systems, for payers, for participants?

I'll defer to my colleagues. I have a lot to say on this, but Marianne.

I'll just make a brief statement. The private sector has been able to make some progress without any incentives. Without carrots or sticks, uncertain things, and that's where we saw that there was enough of a need and demand, and maybe also a little bit of reacting to the potential regulation of, and before actually 21st Century Cures was even passed around information blocking that moved the market.

It's a little bit more difficult, and in a perfect example, Anish, you were talking about individual access. The capabilities exist today. The policy and trust frameworks exist today to make that happen. The impediment is actually one of a fear of... Having a HIPAA breach if they inadvertently release the wrong person's records to someone, and that is a chilling effect on the actual support of what a very needed use case.

And so that is something where there is sort of a regulatory framework that it is. Impeding interoperability. So that, in terms of other carrots and sticks, and how do you overcome some of those barriers, some of them are okay. Moving to FHIR based exchange makes that more palatable. We know that you're required to, share and provide individuals a copy of their records.

In terms of other carrots and sticks, I think that's probably more in Mark's domain and Aneesh's.

Failure for me, personally, like my deepest regrets. When we wrote the memo, it was me, Farzad, Todd Park, and Danny Weitzer became my deputy, and Dr.

Peter Bosch. We were all outside of the government when the HITECH Act passed. I was Senate confirmed, I think, in April of whatever that was, 2009. We missed the beginning round of it. We wrote this note and we said, look, the ACA wasn't called that. We were going to do health reform, okay? And we did HITECH before health reform for reasons that were political, whatever.

It doesn't matter. But the dream was, incentives would be aligned through payment reform. So my dream bill was that CMMI, with the eventual CMMI, would be the north star for interoperability. Because they would create the economic incentives to say, this is how we unlock reward high value care. And you cannot do a high value care reward without clinical data to demonstrate outcomes.

It's just, you can't do it. The dream was, we would have this North Star, and interoperability rules would point to the North Star. Man, I just am so mad at myself. We didn't do enough to just like force that linkage. So what we ended up happening was People doing fee for service care and being annoyed at all the mandates and telling everybody it's burden.

So we had to weak T some of those things when they were the very things that you needed to get right to do value based care. Whatever. Coulda, woulda, shoulda. It's frustrating to no end. There is very much in the case where when you align the incentives, like in the Medicare Shared Savings Program, we've made it difficult for operators of MSSP to do the data sharing, but when they are able to overcome those annoyances, there's a great alignment of interest between the providers, and in this case CMS, to organize the information for higher quality care.

You don't need a separate subsidy for the specific tech widget. Because it's an obvious thing to do in the context of the overall value based care world. If we believe the number will shrink 750 million to a billion dollars of waste. Todd Park said it better than I could ever say it. When we first did the HITECH Act, everybody was talking to Todd, who was out there evangelizing, open data.

And was saying, look, We want to learn how to get a piece of the 30 billion. And Todd was like, hello! It's, at the time, the trillion dollar healthcare economy for which there could be this huge savings opportunity. you want to influence that, not micromanage what qualifies for incentives.

And so there was a little bit of a forest from the trees gap. And so the demand signal for value based care did not meet the timeline of interoperability regs. And that frustration is what led to crappy weak T implementation efforts, because it was like annoying and nobody wanted to do these things.

They weren't rewarded for it. But we needed it on the other end. I hope those have come to convergence with the Cures Act. And so now... It's all hands on deck 2023 forward. We're all in, we just were a decade late to the demand signal.

people get frustrated with me because we will talk about meaningful use.

And essentially my stance on meaningful use is with all of its mistakes I think a majority of healthcare would still be on paper if it did not have the incentives that it did have associated with it. And so I go back and forth with people on social media and I'm like, look, I understand your frustration.

I understand physicians frustration. I understand patients frustration. But I think we're at this cusp of, finally realizing all the value for all the heartache we've gone through for the last 15 years. And again, I come back to this AI model that, I was privy to this past week that we were looking at, and I'm saying, oh my gosh, you have an unauthenticated experience where you're querying the information, and it's giving you like the specific, I want a female dermatologist in this zip code, and boom, there it is, and you're querying the information, and you have an authenticated experience, and you can actually say, hey, What's the doctor's name that I visited with the last time and it'll tell you and it'll say he prescribed something for my diabetes.

What was it? It'll show up. And I'm sitting there going, yeah, that was the, that's what we all expected 15 years ago. Now, clearly the technology wasn't there. There was a lot of steps to go through, but we're. We're almost there now, and I want to throw this out because I have not heard the compelling economic reason as a healthcare CIO that I'm going to stop what I'm doing, put down my pencil, and go, you know what, we've got to do this today.

There's a model here. I'm going to connect with my partners in a much more efficient way. I'm going to enable new entrepreneurs to do things. I'm going to change the patient experience fundamentally. That's what I want to hear from the three of you. why should I put my pencil down and

start doing this?

Mark, have Mark say that, because that's really hard.

So Bill, just a question. Are you speaking more broadly or TEFCA is what you're trying to

hone in on here? I'm maybe I'm speaking broadly about interoperability, but we can focus in on TEFCA, if you will. If I'm an Epic shop, I'm sort of looking at this going, look, I'm already sharing my record with.

Blah, blah, blah, all over the place. And I'm a part of Cosmos. I'm a part of this, I'm doing my part for humanity. And, what's going to be the benefit of redirecting my team in really understanding Tefca, its benefits and educating them on the FHIR endpoints and all those things.

Yeah,

a couple points here. One is that, I tried to touch on it earlier but we don't view Tefca as being disruptive. It could be in some ways, because it's different, and things that are different are going to be disruptive in some regard, but we're trying to build off of the work that, these great implementers like Care Equality and Commonwealth and others have done already.

So it's gap filling, essentially? I'd say

so. I think even though you have these national networks, there's still siloed information. It's a fragmented system. That doesn't really connect all the dots. We're closer, but if you look at Epic, you, or, these are all, entities that are looking to join TEFCA which is great.

But, that's still a bit of a siloed thing, even though they have a broad network. Are they connecting with everyone else right now? I think that's what TEFCA is seeking to do, is create that base level of trust. To say, you have your business model, we have our business model, and we can make it work together, and you can still be competitors, but still work together for the greater good.

Anish,

did you have something to add? No, I was going to say that the individual access use case would be disruptive, and game changing, and a big deal. And the reason why you're getting a lot of this pushback on the use of it is that we don't know how to do the non open. Basically what that means is, if I give Marianne the all you can eat buffet key, Do I trust that Marianne's going to only retrieve Bill Russell's a common name.

How many Bill Russell's and all that. That freaks people out, okay? That's why I've been arguing the disruptive use cases might be better started off in the bulk FHIR networks within trusted communities. Like in, the IAL2 requirements, for example, right? know from NSTIC, from the Obama days, we try to create this prove that you are who you say you are on the internet.

And that we could allow for that to make sure that okay, you, my mom and dad set up their mymedicare. gov account because I was forcing them to do it for blue button. If you ask CMS right now, how many seniors out of the 66 million eligible mymedicare. gov account holders have a username and a password?

It ain't 66 million. President Biden just issued an executive order for people with Alzheimer's. saying we're going to launch this caregiver program because you have a loved one who's going to organize your care. And in the executive order, the president said, I'm directing the secretary of HHS to make it easier for caregivers to access your Medicare information.

What's the plan? There is no plan. The plan is you call 1 800 Medicare and they give you a form that you manually fill out and then whatever, fax it, I guess, to somebody in Baltimore, and then you get some kind of, I don't know what you get, but it ain't blue button from my So that's hard, okay? But the president issued the executive order and I'm hopeful we can make progress on it.

And that's, because I'm not having an Alzheimer's patient having to set up a MyMedicare. gov account in order to unlock Blue Button. that's the most disruptive thing to get right. I don't think that's going to happen overnight.

But that, if there was anything to have everybody on this Zoom work on, it's like, how do we do that? I think the bulk FHIR approach is gonna, all you can do, but FHIR scares everybody. Bulk FHIR is controlled and secure, so you can do pilots. You could, okay, if you go to an approved app that's through the thing and Alzheimer's, CMS is doing this Alzheimer's guide model.

Okay, they can do it, and they can do it with the TEFCA networks. We could sort this out, but I think that one is massively disruptive. For the good, but oh boy, we better get it right. Bill, to your point about the value

proposition, I think really the value proposition of what we're talking about here is having a network approach that has is multi use.

And instead of having a dedicated approach for sharing information for treatment and having a separate network or approach for sharing information for individual access and having a separate approach for public health in these one off ad hoc requests, If you have a one framework that supports all of these things and there's consistency across the board, it makes it much easier, simpler.

And I do believe there's a return on investment for CIOs that would otherwise have to support these point to point arrangements and multi network arrangements. I

agree. Mark, you wanted to? Yeah,

just real quick. I was going to say, I agree with what both of you guys said. And I think when we talk about disruption, like you said, Aneesha, it could be good, it could be bad.

And especially with IIS, this disruption I think is necessary because the conversation isn't being had until we start to have that type of disruption and think through how can we make it work. It's not going to be. Smooth from off the bat, but like I said, everyone's in it together in TEFCA, and we're trying to work out solutions and figure out ways to protect the data, work with our OCR colleagues to make sure that HIPAA breaches are still, an important part of this, but figure out a way to make the information flow and patients get the information

easier.

By the way, Nish, I do keep coming back to FHIR and BulkFHIR, especially BulkFHIR, as the... It's the crown

jewel, man. It's like we spent so much time to get this thing sorted out. Let's use this thing.

Exactly. And we had a fair amount of tools that we were... utilizing on our end to do some of these things.

And I've talked to some health systems that actually have developers internally that are tapping into FHIR, not necessarily BulkFHIR, but they're creating some really interesting and useful cases. They're really I'll give you just one of them. I was talking to a physician at George Washington and he, in D.

C., and he, Essentially, he was using FHIR, he's pulling this stuff down, he's anonymizing the data, he's putting it through chat GPT, and he's an ER doc, and he he wanted to see, as the ER doc, he had all these diagnoses, and he wanted to see how well it did.

And I understand it's not trained and all this other stuff, but his findings were that in one out of a hundred cases, it was silly, like an ED doc would never do that, but he's in a majority of the cases, it came back with my diagnosis.

So let's talk about the CIO use case. So let's say for the sake of discussion, we go back to stage two, facilitated point to point network with all the efficiencies that Marianne said for the common agreement fully endorse. Now, let's say for this discussion that GW doc. Care First, which is the blues in DC, said, you know what, we want to test individual access services as a network model.

We'll open up our FHIR API on the payer side. You open up the EHR side. And what you need to do that is you would use your G10 bulk FHIR server to say, here I'm going to create a key that I'm going to give to Marianne's network participants that will only query. for patients that are in a registry created by GW of care first patients.

And there they could make the decision. Okay, if it's NIST IAL2 certified they did the face ID and whatnot, and they can unlock the thing. The patient doesn't have to set up a portal account on either side. They can unlock it through TEFCA to an app that they trust to help them do whatever they want to do.

Second opinion, blah, blah, blah. That we could do today. And that's my hope. That we use That all you can eat buffet key scares the bejesus out of people, okay? The, because you have to give it to somebody that's not inside your organization. Legal agreements notwithstanding, people make mistakes, things happen.

That is some scary ass stuff. So we'll get there, but that takes time. It's trust, but verify, or whatever. The bulk gives us a controlled environment to benefit from the economic savings of TEFCA. Do we want to have a million vendor contracts with a million Appendix A's of rules on how to do the B2B sharing?

That's ridiculous. Of course you want the common agreement, but you might want to agree to employ that common agreement for use cases 5 in a controlled experiment. We could do that, Bill. Audience members could do that today.

this will be the last question.

You're the only one who's going to get to answer this question. Oh gosh. One of our participants put this in. What are some of the current challenges uncovered? with the first QHINs and their implementation journey. wE don't have any

designated QHINs yet, so we will in the very near future, which we're really excited about.

I would say the experiences we've had have been collective. I don't think there was a challenge with QHINs per se, but the speed with Which we're operating means we had to sort of adjust and adapt as we were going through the process. And I would say there are learnings across the board. We're really lucky that we're working with a group of organizations that are really invested in doing this and working with us.

I think that it's just like anything new, we're not really have an opportunity to pilot this and then refine it and then, roll it out. We're sort of adjusting as we go. So I think just that ability to be adaptable and to maneuver in a very tight time frame when we communicate. Our national coordinator is very goal oriented, which we love, and we are too, and so when we set a date, we meet that date, and that just means we, we adjust and adapt as we go, but that's real life, that's real world, that's real implementation, and that's, as we roll this out, we're going to continue to evolve.

Marianne, Aneesh, Mark, I want to thank you for your time. all the participants who tuned in, really appreciate you coming in as well. .

Thank you very much. Thank you.

Thanks everyone.  📍

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