Episode 45: Driving Healthcare Innovation with Ryan Howells

In Episode 45 of The Informonster Podcast, host Charlie Harp sits down with Ryan Howells, Principal at Leavitt Partners, to explore how collaboration, policy, and open standards are driving meaningful innovation in healthcare.

From the origins of the “Kill the Clipboard” initiative to the push for better data quality, Ryan shares how he and his team at Leavitt Partners are helping align government and industry leaders to improve the quality and usability of health data exchange. The conversation dives into digital quality measures, the evolution of HIPAA, and why an abundance mindset could be the key to transforming healthcare data exchange.

If you’re passionate about healthcare policy, interoperability, or the future of data-driven care, this episode is a must-listen.

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Transcript

Charlie Harp (00:10):

Hi, I am Charlie Harp and this is the Informonster Podcast. And today on the Informonster Podcast, I have a special guest, Mr. Ryan Howells. Now before he introduces himself, I realize that many of you know and love Ryan Howells. In fact, when I first met Ryan and I said, Ryan, it seems like everybody. And Ryan said, Charlie, I know everybody. And I said, you don't know everybody. He said, no, I really, I do know everybody. And I said, it's not possible. He says, Charlie, name somebody and I'll tell you whether or not I know them. And I said, well, the Pope, you don't know the Pope Ryan? And Ryan says, of course I know the Pope. And I said, I don't believe you. He says, I'll prove it. So we both get on a plane, we fly to Italy, we go to Vatican City, the pope's up on the balcony, we're standing in the square and Ryan says, I'll be right back.

(01:02):

And he climbs up the scaffolding. He gets up on the balcony, the Pope embraces him, brings him into a big hug. Ryan looks down from the balcony and sees that I'm passed out in the middle of the square. He climbs down, he rushes over to me and he says, Charlie, are you okay? And I said, yeah, but I didn't believe you knew everybody, Ryan. But when the guy next to me said, Hey, who's it on the balcony with Ryan? I knew I knew. So Ryan, for the people out there that don't, my seven listeners that may or may not know you, why don't we start with you kind of talking a little bit about yourself and how you found yourself in healthcare today?

Ryan Howells (01:49):

That was way too kind, Charlie. That was way too kind and all of it, not true, but it was very funny actually. Very, very funny. Yeah. So I'm a Principal at Leavitt Partners. I've been here for almost a decade. Prior to this, I was a general manager for healthcare organization that sold the enrollment product for HCA exchanges in three different states. And I've been working in health plans, data and technology for my whole career and and I love it. And to your point about knowing people, I think the biggest thing, Charlie, for me right now in my career is that I get a chance every day to work on really hard problems that everyone has known has existed for a long time. And I have a really, really blessed opportunity to be at Leavitt Partners to do this kind of stuff. I never even think this type of a job even existed.

(02:52):

And it's really funny when you tell me, I know everyone. I just talk to really smart people like you all over the country, and they help. I always joke that I'm the amalgamation of smart people. I'm not actually smart myself. I just like amalgamation of that because it's really fun to just be able to say, who's solving these problems and how do we actually figure out a way to federate the solutions to these problems all over the country? And that's what gets me up in the morning. That's what gets me excited about doing this stuff. And so think of me as a problem solver, Charlie. I often think to myself, what is it that I really do? And I really like solving big, fat, hairy problems that have inextricable problems that people never thought could be fixed. Interoperability, for example. It's a problem that's been around forever and we certainly haven't solved it yet, but how do we figure out the puzzle pieces that we need to put together, both from a policy perspective and from a private sector perspective to actually solve these things so that we can actually do other more exciting things in healthcare.

(04:07):

That's kind of really who I am and what makes me tick.

Charlie Harp (04:12):

Well, and Ryan, I haven't mean, you and I met each other years ago, but we really didn't start working together on the picky framework until about a year ago, roughly a year ago. And one of the things, not to give you a big head or anything, but one of the things that I really admire about you is you do know a lot of people and you're also very willing to connect people and to see when you have your eye on a problem, you have a really good sense of the people that you can get together to address the problem. And you also come at it with a lot of positivity and enthusiasm, which makes it easier. It's kind of infective. I see people get the Ryan Howell's infection of wanting to make meaningful change, and I really appreciate that about you.

Ryan Howells (05:03):

Yeah, well, right back at you. It's been awesome working with you. And I think there's really two types of people in this world, Charlie. I think there are people that view the world as more of a scarcity mentality where they think to themselves, there are winners and losers in life, and if I'm not a winner, then I'm a loser and I've got to win at all costs. And I've got to kind of basically push everybody in my wake, so to speak, to do that. But then there are people, and I consider myself one of them, more of an abundance mentality. Actually everybody can win. We actually can go into this and everyone can win. Healthcare unfortunately right now, Charlie, as you know, is right now in a massive scarcity mentality. It's dog eat dog, it's payer fighting provider. It's patients not trying to get access to their own data.

(05:57):

All this stuff is happening and it's like a very downward cycle. And I feel like right now we have to break out of that and get to more of an abundance mentality. We need to figure out how everyone can win, and we need to figure out there are things we can do in healthcare where everyone can win. And I think we've really just got to focus on that. So that's kind of really the mentality that I've approached it with about how do we figure out a way where everyone can win and where we can really get innovation in healthcare at the scale we need to, quite honestly, save people's lives is really the reason that I think we're all doing this.

Charlie Harp (06:37):

No, I agree. I think that we do kind of scrabble over these basic commodity type things when if we can get over that as an industry, there are much more exciting things we can fight over later. There's an abundance of opportunity if we can just get to the point where interoperability is a given and not a question. Right,

Ryan Howells (06:59):

Exactly.

Charlie Harp (07:00):

So our bromance notwithstanding, talk a little bit about Leavitt Partners. When we first started, I was like, what does Leavitt Partners do? I was really trying to figure that out. And I'm sure there are other people that would like to kind understand the mission of Leavitt Partners and what you guys are doing in the industry.

Ryan Howells (07:19):

So you're not the first one to ask that question. Everyone's like, how in the world do you get paid? What does this look? It's actually a good question to ask because people are like, what value do you bring? Well, you're bringing a lot of value and now we're trying to figure out what it is you do to actually get paid. So we are a federal healthcare policy and advisory firm that was founded by former Secretary Mike Leavitt back in 2009 when he left public office. And at that time, and still today, he is known as being very, even though he's Republican, he's been known as being very bipartisan. He's a center right Republican. And he was known when he was three-term governor of state of Utah. He was Secretary of Health and Human Services. He was also an EPA administrator as well. And as a result of those experiences, he brought together multi-sector stakeholder collaboratives to try to solve difficult issues.

(08:27):

He's an amazing listener and he is amazingly down to earth, even though he is met with kings and queens and presidents and all kinds of things. I remember him sitting with me in a Hampton Inn somewhere in rural Virginia eating cereal out of a styrofoam bowl. He's okay with that and it's totally fine. And so that's where we all at Leavitt Partners have gotten our inspiration is we've said, man, this is who I want to be when I grow up. I want to be able to figure out a way where we can solve some of the country's most pressing healthcare issues. And that's what we've done. And so as healthcare Federal Policy advisory firm, what we do is we focus on an ability to do two things. One is we bring people together in these multi-sector alliances that are membership based. That's how we make our money.

(09:24):

They pay a small fee to us to be participating in that, where we bring people together to solve these issues and figure out ways where we can actually bring effective federal policy to the government. Because what happens as Charlie is some of the individual interest groups, when they go to Washington, either in Congress or the administration, they kind of know what they're going to say before they say it. They kind of understand, oh, the providers want more money. The hospitals want more money, the payers want more money, whatever the case may be. But when we go, they're like, Ooh, what do you have to say? Because they know our reputation. And so they say, you've already bought a lot of multi-sector stakeholders together as a result of that, what you actually are proposing. And we've already kind of brought them the solution. And so when they look at it, they're like, this is really interesting.

(10:18):

And it's always what we do as bipartisan. So we will go to both parties and say, do we have some agreement here? Does this make sense? And then we'll get opportunities to pass that. So hopefully to be able to pass it in congress or to be able to apply it in regulation or reduce regulation wherever the case may be. So that's what we do and it's really unique. And then we also provide advisory services to clients in terms of navigating the federal health policy landscape. So whatever sector you're in, if you need to better understand how this all works and what's happening and what's going on and what it means and all that fun stuff and where things are going, at least from our opinion, we'll provide some consulting services around some of that.

Charlie Harp (11:05):

Okay, that makes sense. So you are currently involved in a number of things. One of the things that I think a lot of people are paying attention to is this recent, I don't know what you would characterize it as a position paper or the clipboard memo that you circulated.

Ryan Howells (11:25):

Yeah, so actually it was prior to the election, I got together with some colleagues inside of Leavitt Partners and we said, Hey, we're entering in a transition time. We don't know who's going to win Harris or Trump. And we said, why don't we figure out a way to memorialize all of the things we've got to get fixed in data exchange interoperability in a multi-sector way. So let's call some of our friends and family, let's bring 'em to DC let's payers, providers, again, vendors, QHINS, HIEs, all the folks that we knew, not all of them, but a lot of them, a representative sample and said, let's get your best ideas. Because for this specific topic, Charlie, we didn't necessarily care who won the election, we just cared that they got stuff done. That's really what we cared about. And so we decided to do that. We scheduled the time, which was just after the election, and we're like, oh, this is interesting.

(12:21):

So then we were like, okay, let's pull things together. We wrote the paper, we presented it at HIMSS. It was called Kill the Clipboard. You can Google Kill the Clipboard and find it on our Leavitt partner site. And when we did that, we didn't know that this was going to be a central priority of the Trump administration. We knew historically the first Trump administration that this was a priority for them. Seema Verma, all the stuff they did on Blue Button. We helped the administration related to that. It was great. But this one was, we didn't know for sure. We knew a lot of the people going into the administration, so we had some friends and family there. And we knew that digital health and interop and patient direct exchange we thought was going to be a priority, but we wanted to expand that out and say, let's do more.

(13:09):

What does this look like? So we wrote whatever it was, 16 page paper. And then we didn't realize that CMS was going to name their initiative after the paper and do the other things that they did, which was awesome just because of the fact that it really wasn't our ideas, Charlie, it was just the ideas of everyone else. And so it's kind of like a coach in football. You take too much blame when the thing goes down and you take too much glory when the thing is going well. That's kind of how we feel about this, is that this is just a collection of the pains and grief and things that everyone has wanted to solve for a long time. We were blessed enough to actually publicize it, but the idea is let's just figure out a way to fix it. Right? Let's do that. And so that's where those ideas came from. They were ideas around how consumers can get more access to their data, but there were also ideas about how we can better exchange data across entities, payers, and providers.

Charlie Harp (14:16):

Well, and I think the timing of it is good also with the new administration because there's a lot of activity in CMS where the things they want to do kind of necessitate modernization.

(14:28):

And one of the things I've learned being in healthcare for a long time is that you can have the best idea in the world, but it's either got to save money or make money or make the system more efficient. So to remove costs from the system and with what CMS is trying to do around fraud and abuse with what we're trying to do with digital quality measures, a lot of these things with where we've been with TEFCA and with HDU and with these other mechanisms for sharing data, it's just a really good time for us to get our ducks in a row and try to solve for this maybe with some kind of a driver other than our intentions to do good.

Ryan Howells (15:11):

And what's interesting too, and some people, because they don't work on the federal policy side, they have day jobs that are working in the private sector, but we work on the federal policy side so much, and we've been across administrations, right? There's only been three times since 2000 when the White House, HHS, CMS and ONC were all on the same page with advancing digital health and interoperability. So all four of those entities had to be on the same page. One was with President Bush and the creation of ONC. They were definitely on the same page there. Second one was with President Obama and a niche when they implemented high tech, they were definitely on the same page there. And the third time is now. So it's literally kind of a once in a generation opportunity where we've got, now we can fix all this stuff. And the reason that's important is because our public policy friends, our public servants that we have that are public officials that are there in the government, they know about a lot of these issues and they are certainly aware of them.

(16:17):

They want to fix them, but they often don't have the political cover. They need to actually get them fixed because they've got to have the appointees be on the same page with them. They've got to have their bosses be on the same page all the way up to HHS and the White House. They've got to be on the same page with what they want to do, otherwise they'll have other priorities and they've got to do those priorities, right? Based on what the administration wants to do. Every administration has its own priorities. That's why we have elections. Totally makes sense. But on this topic in particular, it's bizarre to me that it's even political, right? That doesn't make any sense. Everyone wants the data to move. Don't know. I've never talked to a democrat or a Republican that have said, I just don't want the data to move at all.

(17:01):

I just feel like it should be locked up in these systems forever and it makes sense. No one's ever said that, at least to my knowledge. So the idea is how do you figure out a way where you can be able to work with the federal government and then be all aligned in making change? And then if you can get the private sector aligned, which is our role, what we do at Leavitt Partners, try to get the private sector in a consensus manner, the combination of those two things, Charlie, are crazy powerful, then we can make real change.

Charlie Harp (17:33):

No, I think that's true. For the people that haven't read the Kill the Clipboard paper, what would you say are the big ingredients? What's the perfect storm that's coalescing right now in healthcare that you think we could harness to make meaningful progress in the next couple of years?

Ryan Howells (17:56):

Well, the big recommendation that we made in the paper was that we said the CEHRT program (Certified Electronic Health Record Technology), which is overseen by the Office of National Coordinator for Health IT, which is underneath the Department of Health and Human Services. Sorry, I don't like going acronym soup, so I'm going to spell all this stuff out for our listeners, but ONC oversees the CEHRT program, and largely, not completely, but largely what the CEHRT program is, is that they're certifying functionality inside the EHR. The reason it was created in the first place was they were given 40 billion plus dollars out to these companies, and they wanted to build the software in a certain way that allows for some ability to say, we have common functionality in these pieces of software. The federal government is funding. Whether you agree with that or not, that's what happened.

(18:50):

And so fine. But the challenge is, and if you talk to David Brailler, who started ONC and David Blumenthal who came after him, they both have told me that. They've said one of the biggest regrets we've had, Ryan, is that we didn't spend enough time in figuring out a way to incentivize data exchange across these systems. And so that is the biggest thing that needs to happen now. And so the idea that we had in the killer clipboard paper was cert needs to be redefined so that we can certify interfaces rather than certifying functionality inside an EHR. And what that does, Charlie, is it does two main things. Number one, it releases the burden off the EHR so they can better innovate for their clients and they can just take in client requests that come through and do a traditional product roadmap rather than worrying about what the next regulation is that we need to build.

(19:48):

That's number one. And number two, it provides a great ability for companies like you and others to innovate on top of the EHR for doing things that the EHR may not be able to do today, which there's a whole series of things that EHR don't do everything that healthcare needs today to my knowledge. But the idea is that how do we figure out a way to innovate on top of the EHR, let the EHR do the things that they do best, and then have an ability where both the EHR and these innovative companies can both work together in a way that allows for these open standards to be in place. The data can flow in a meaningful way.

Charlie Harp (20:30):

If you think about it, the earlier regulations were a big driver to say, you got to get off paper and get onto an electronic medical record. And now we're at the point where a lot of providers are using electronic medical records. And now the question is now that you have the data in electronic format, how do we make that data flow so that we can take advantage of it across the ecosystem? Right, exactly. And I think that that shift from around the functionality and the type of functionality that's expected to the interfaces is a totally valid shift. It's kind of an evolution. Now that you have this, now we have to figure out how to make it talk to each other. And a lot of the things that I imagine are important to that are standards like FHIR. And the other thing that I know that you've been very involved in is the digital quality measures. I don't know if you want to talk about that.

Ryan Howells (21:23):

Yeah, so there's two kinds of digital, I'm going to oversimplify here, but there's two kinds of digital quality measures. One is CMS asks providers to send them digital quality measurement reporting as part of the MSSP program as CMMI and all the stuff that they do there. And then obviously we have NCQA, the payers are actually reporting on that HEDIS measures related to it. Both are very manual today, very, very manual, very difficult to try to do, and it's a byproduct of not having electronic systems to do this. Previously, everyone, the good news is everyone wants to move to more digital measures, which digital measures to me is ideally no human intervention. The systems are talking to each other. That would be great. And if that's the case, we will literally take out hundreds of billions of dollars in waste out of the system just doing that.

(22:17):

So about three years ago, we connected with NCQA, we had some friends over there still do and said, Hey guys, what is stopping us from moving to digital quality measurement? And they told us, and they started walking us through what does this look like? And one is the data quality, which we can talk about PIQI and how do we improve the data quality itself that is being sent to us? And two was how do we actually translate the data from FHIR to CQL, clinical quality language and then run these measures on top of all of that, the HEDIS measures that are now in what's called CVS. So what does that actually look like? And what was interesting about it's that it became a matter of just getting people in the same room to have the conversation. So that's what we did. Bryn Rhodes helped to draft the clinical quality language and we're like, Bryn, what's needed here?

(23:15):

We just need a focus group of people just to work on this to improve CQL so we can run the measures. He goes, that's exactly what we need. So we had this summit in DC and it's like four hours long, and Bryn was there and at the end he's like, this is the greatest thing ever. This is awesome, let's go. And he's been great because he's been doing it in HL7 communities for a long time, but it's never had the focus on it to actually make it work. And fast forward to now, Charlie, the cool thing is that we now have run, there are vendors out there that have run HEDIS measures, a hundred percent end to end just using FHIR and CQL, and they get the same results that they would get manually. And we're there, we are here. And the combination of that plus PIQI to improve the data quality so that those two things can work together in a meaningful way is super powerful and scalable to be able to extract all of this money from manual processes that we have today.

Charlie Harp (24:14):

Absolutely. And you know what? I would think that quality measures the same kind of things that drive quality measures could also be brought to bear on another very human resource intensive segment of healthcare, which is registries, trauma registries, cancer registries. There's so much human work that goes into populating those. And you would think the same kind of act, the same kind of pipelines we build for quality measures we could automate for registries if we had the data in the right state.

Ryan Howells (24:47):

A hundred percent. My good friend I do Frank Alka at American College of Surgeons at all? No. Okay, he retired, but he would tell me about registries. I didn't know much about him. And he would explain to me, he's like, Ryan, we can tell you where the best surgeons are anywhere in the country because we know based on other outcomes from other surgeons who the best surgeons are. And not only that, we can tell you exactly what to do in any type of situation to be able to get the best outcome. So they know what quality looks like at a procedural level to do. And I'm like, wow, registries are awesome. This is great. So then to your point, Charlie, it's like, wait a minute. Let's figure out a way to be able to do that at the point of care where someone, a surgeon is there either preparing for surgery or do it so that the surgeon knows in this specific situation with this patient and these diagnoses and all the things we relate to what is needed for this person. And that's the benefit of having this data at scale where we can be able to use open standards to actually scale it. And I am like, great, when I get my next surgery, that's awesome. I'm going to call you up and I'm going to ask you where I need to go in Georgia to figure this out. So yeah, it was funny.

Charlie Harp (26:07):

Well, that's the other cool thing too. When you think about something like a digital quality measure, I've always, and I don't mean this in a pejorative way, but I've always said quality measure is kind of like a rear view mirror. You're looking back to see how you did, who did I run over? How did I do in the last year? As we mature the industry and as we start interoperating, you could create a proactive quality measure that allows you to swerve, that allows you to, it's not just about looking at how you did, it's affecting how you do. And I think that's a great way to evolve. And it kind of goes back to when I was at Zincs and we were taking the evidence and baking it into order sets to help drive behavior to improve outcomes proactively. So speaking of digital quality in NCQA, I tell people this story, how you invited me to go to Washington DC to sit on this meeting, and I'm like, I don't even know why I'm going to this meeting, but Ryan invited me, so I'll go.

(27:07):

I knew some people that were going to be there. So I grabbed a cookie cup of coffee, sat quietly at the side of the table and you guys were talking about data quality. And I started working on PIQI probably about six months before that and I just finished the ASTP lab result quality review, the first pass of that. And I was kind of still evolving the thought process around PIQI. And I kind remember we were talking about data quality and I kind of raised my hand and said, well, I've got this thing I remember that working on. Yes, I remember that. And talking to you, talking to Jonathan Nebeker I was talking to Jonathan at the health data palooza and he's like, Charlie, you've got to, and Jonathan did this thing that Jonathan does while you're having a conversation. He says, I'm just going to call Ryan right now. And I'm like, but I hadn't even made it in my mind. He's like, no, I'm going to call Ryan right now and he calls you and he puts me on the phone with you.

(28:08):

So what I say to Jonathan is this whole PIQI thing, it's your fault. That's right. But that's kind of the way these things happen. You get to know some of these folks out there that are trying to deal with these problems in the trenches. You have people that have been thinking about these things academically or theoretically, let's say for a long time and been doing it, little pockets of research here and there. And once again, it takes a catalyst to make something happen. And PIQI for me is a labor of love. I think that data quality, if we can fix the data quality issues we have, it solves so many things downstream. I think AI shine a light on it, but I've been saying this about clinical decisions, support quality measures, population health, basically any type of analytic. If your data's not good and not ready, then it's not going to deliver the value that you expect. But the PIQI stuff so far, for me, it's been interesting. It's my first big HL7 initiative. I mean, I got to give it to the folks at HL7. They are committed and passionate and they're very generous with their time. It is not an easy journey, not by any stretch. I was in a call where we discussed the meaning of a word for like 45 minutes last week.

Ryan Howells (29:35):

There you go.

Charlie Harp (29:36):

But it's very constructive and beneficial and it's been an interesting journey the last year of the PIQI Alliance.

Ryan Howells (29:44):

Yeah, it has been. And for those who dunno, Jonathan's the chief medical informatics officer at the VHA and he's a good friend of Charlie and i's and yes, and kudos to Charlie because Charlie had spent all this time developing all this intellectual property and somehow Jonathan and I was able to convince him to make a lot of this open standard, which is just amazing. That's the type of person Charlie is. He's just unbelievably amazing. I would just say that, let me just make sure that the audience knows why this is so important. This is so important because this came from a conversation I had with Steve Posnack who's an office national coordinator many years prior where I said, what keeps you up at night? And he said, data normalization. He goes, we do not have a data normalization layer for the whole country, so all these APIs are going to be exposed and then we won't have any ability to measure the data quality across the board.

(30:38):

And we know it's bad. I am putting words in Steve's mouth, but basically that's what he said. And I said, well, give me some time. It took me a couple years we had that meeting, we then started talking about it and I'm like, oh, there's proprietary vendors out there that are doing it, which makes sense. They're trying to make money, but I'm like, we do need an open standard. And at the time we had Inferno, which didn't have anything to do with data quality. It had to do with data conformance. But then when we saw the stuff that you had done, the reason that we were pushing so hard on the open standard thing is that's the only thing that really scales across the country if it's named in federal regs. So I knew that that was our window. So we were like, if we could do this, and Jonathan knew on the VHA side, he could scale it too.

(31:19):

He could require potentially community health providers to send them the data that've gone through PIQI. So that got us super excited. We're like, oh, this is great. And then it scaled from there as you know, ONC's interested, now CMS is interested, VHA is interested, start going through the list. Social security is interested for benefits determination. And that to me, Charlie, it's a lesson in open standards that is the power of open standards. And you're right, HL7 is a standards development organization. Like you said, sometimes it's very painful, but the PAINFULNESS leads to an outcome and the outcome is an open standard that folks have agreed to that allows for that to be pointed to in federal regulation and to be scale. And we did that with the Care Alliance. SEMA Verma got on stage at HIMSS and said, Hey, we want to do a blue button for all the payers in the room. And I went back to our friends and was like, wait a minute, we don't have a standard for that. There's no API standard. So we built one in Care Alliance CMS pointed to it in the regulation and now it's going to be scaled all over the country over the next few years. And that's exciting about, exciting about open standards is that it becomes the power to be able to scale innovation. And that's how the internet was born, of course.

Charlie Harp (32:39):

Yeah. Well, and that's the other thing with HL7, both with HL7 and with the group that we pulled together on the PIQI Alliance is, I don't know if I'm smart or I've just been doing this a really long time, but taking something that you create and opening it up to a group of people that have also been thinking about these problems for a long time and are also really, really smart. Either it validates that you did something right or they're very quick to identify the things that could be gotchas and could be improved or may not work in a particular scenario. So that's the other great thing about all the feedback that we've gotten as part of the HL7 validating process is a lot of really smart people have dedicated time and energy to help making it better. And I'm really grateful for that. And for me it's a humbling experience when you come up with something and you start to see it grow and evolve like this. And if we do end up leveraging PIQI to improve the quality of data across the country, that would be a big bucket list thing for me. Everybody wants to make a difference. And being part of a group that does something like PIQI, this would be a big deal for me

Ryan Howells (33:53):

Personally. Well, well on our way, thanks to you. And we have I heart PIQI, and if you need the T-shirt, Charlie's got a T-shirt for you.

Charlie Harp (34:01):

PIQI Alliance. We can get you a T-shirt should be picky about your

Ryan Howells (34:04):

Data, right?

Charlie Harp (34:05):

So talk a little bit about Karen Blue Button Alliance.

Ryan Howells (34:09):

Yeah, so the Karen Alliance was formed about 10 years ago and it was formed specifically for patients to get access to their digital healthcare information at the time. It was right after we actually had our first meeting in May of 2016 and September of 2016 is when, so about nine years I guess was when we chartered the organization. When we had that discussion, it was just prior to the 21st Century Cures Act passing when 21st Century Cures Act passed, it basically said Data exchange is no longer optional, it's mandatory. You have to send data between payers, providers, and patients. Sending data to patients has always been mandatory through the HIPAA individual right of access. But the challenge was that there was no electronic means by which to get access to your data. You couldn't just get an app connect to an API and get the data.

(35:03):

That wasn't even a thing in 2016, but as a result, and FHIR was obviously emerging. So as a result of that happening, we got a group of stakeholders together and like we do in these alliances, and we said, could we make this happen at scale now? Now that we have apps, now that we have the emergence of APIs, now we have 21st Century cures, could we make this happen? I always like to joke, Charlie, the first few meetings that we had, we had chief privacy officers and this is a literal thing. They ran out of the room, ran just basically left the room and they were furious. And I had to triage it, go out to the room and I'm like, what's wrong? And they're like, I cannot believe this is heresy. I can't believe you're even talking about this. Patients will never get access to the data.

(35:46):

It's never going to leave hipaa. It's just wrong. I don't even know why I was invited. They were just angry. I'm like, what? This is where we're starting. And other people said, we've tried this before. It doesn't work. We've been doing this for a long time. None of this stuff works. And I said, this is not a new idea. I said, let's just figure out a way we could do it. And with the help of an Chopra who you know and David Brailer, David Blumenthal, governor Leavitt, that's why people showed up to the meeting, is those four were cove it. And I'm in the background going, this is the greatest thing since sliced bread. This could really take off. And what transpired fast forward nine years, Charlie, is that community number one has grown into 40, at least 40 different consumer facing apps who have connected to an API in production.

(36:36):

They're all on a website called my health application.com. You can see it. It is translated into what's called the Karen Code of Conduct, which accounts it's a voluntarily attestation to agree to certain privacy consent and security principles for apps that are not covered by hipaa, that's been adopted and named in federal regulation. Open standards have been created. So the Karen IG for Blue button is now the claims data standard for all FHIR API claims data in the whole country for all the payers. It's been also named in federal regs what's called the care and IG for Real-Time Pharmacy Benefit Check, which allows a 50 to 75% reduction for out-of-pocket costs for consumers, which has been named in seven states at least. The concept of real-time benefit check has been named in seven states. They need a solution. Two states said there needs to be an API and we're the only API in the market.

(37:28):

So the three big PBMs have come to us and said, let's implement that too. That would be really cool. We've also provided a digital identity framework for the whole country that says how do we actually identity proof individuals across systems so that they don't have to log in multiple times, right. To make that happen. And that's important for cybersecurity reasons, for all kinds of things. And we were the first ones seven, eight years ago who said, everyone should have a digital identity credential. And I'm like, what are you talking about? I remember saying it at HIMSS and having some of the vendors come up and go, I don't even know what you're Ryan, what nist? What is nist? I don't even know what any of this stuff mean. So we've come a long way since then and a lot of the things that we are doing, Charlie, is going to be foundational to how we exchange data via FHIR in the future.

(38:20):

So as we move to B2B FHIR, we have to have digital identity. We have to have a FHIR endpoint registry, which we've been talking about. We've got to figure out ways where we can have conformant with the APIs, which is what Inferno is going to help with. We've make sure the data quality is up to par, which is what PIQI helps with. We need to have all this stuff in place in order for us to be able to have better and more scalable inability. And by the way, last thing I'll say is, and I'm a hundred percent agreement with you, we must have APIs before AI for clinical decision support at the point of care. And I will continue to say that till I'm blue in the face. But if we do not have that, we will never be able to spend the money we're going to have to spend to train the models is going to be astronomical and not affordable in healthcare if we don't have that. So let's focus on the API effort, cleaning up the data with PIQI, figuring out ways where we can make sure it's conformant and then we can get to clinical decision support at the point of care for patient and provider. And we can do all the fun stuff we've been wanting to do forever.

Charlie Harp (39:30):

I mean, the bottom line is AI could really help us in healthcare, but we need good quality interoperable data just for providers for humans to do the work

Ryan Howells (39:42):

That's right

Charlie Harp (39:42):

And get good outcomes. So it's kind of a foundational requirement in my opinion, a hundred percent. What do you think about HIPAA and whether or not we to really do a lot of the things we're trying to do? I know there are a lot of anachronisms baked into the HIPAA legislation. Do you think that that's something that we're going to have to address to make meaningful progress with all the things we want to do with interoperability?

Ryan Howells (40:10):

Yeah, I do. And so my hot take on HIPPA, Charlie, is I actually think it's time we eliminate it. And the reason I say that

Charlie Harp (40:20):

Is people are leaving the room. Hold on.

Ryan Howells (40:21):

I know. I know. They're

Charlie Harp (40:22):

Going to leave the

Ryan Howells (40:22):

Room just like they did. Just they did before, right? They're all leaving the room. They're all leaving the room, they're all leaving the room. Everyone's like, he's out of his mind. What is he talking about? Now? I don't know if it's realistic or not too eliminated. I'm just saying it needs to be eliminated or drastically changed. And the reason for that is the following. Number one, it has become probably the single biggest barrier to data exchange that we have in healthcare. Data use agreements, lawyers fees, contracts, business models, you name it. It's a huge spiderweb of craziness and it's so, so difficult. And by the way, related to minimum necessary, that's super important for sure. But we have 21st Century Cures. 21st Century Cures says you must send the data, you must exchange it with each other. So if you must exchange it, HIPAA then is therefore not allowing you to exchange it because you got to have all these data use agreements with everybody and you got to make sure that it works.

(41:21):

And so there are two conflicting federal regulations right now. That's one of the problems. That's number one. Number two is that HIPAA was about the organizations, payers, providers, clearinghouses and the data that's exchanged between those organizations, but it wasn't necessarily about the data. What I believe needs to happen is we need to clearly define what health data is, which again, that could take a while because you type in all the different things related to what makes up someone's health and there's an active debate going on about what that looks like. But we need to talk about data related to the person and how we protect that data. No matter where it sits, Charlie, it doesn't matter if it's in the FTC protected environment, which that's where the consumer lives or if it's in the HIPAA protected environment. What matters is that we protect the data and that we make sure that the data is privacy controlled, consent based, highly secure, right?

(42:23):

All of that right to be forgotten. All of those things need to happen with the data. So if we can focus on the data rather than focusing on all these agreements we have to have with each other, that's a much better way. And then we can start getting into the fun stuff that we started talking about, which is how we exchange it with the patient, how we send it to the provider, to the payer. There won't be a regulatory barrier between those two entities. It will be both are the same, both are on the same playing field. Let's protect the data before we actually move to an area where we're trying to figure out these data use agreements, which is impossible. It's so difficult to do.

Charlie Harp (43:02):

I think the other thing too is when you think about when HIPAA came out, when HIPAA was passed, the world we live in and how much of a digital footprint every one of us has with our devices and our social media and our accounts and everything else, it's such a different world from a data perspective when it comes to individuals than it was back then that it really is. The world has outgrown a lot of the things that were contemplated when HIPAA was created and whether you think it should be gotten rid of or reimagined and renovated based upon what we are doing and what we know today. I agree with you. I think that it's time to at least modernize how we think about information. Because the other thing too is we are still operating in this world where the data is siloed and we're exchanging things.

(44:00):

And honestly, I think over the next 10 years as we make it easier to interoperate, we're going to encounter this echo problem in the ecosystem where data is going to be moving in all these directions. And it's almost like putting a picture on the internet. You can't really get rid of it. Somebody asked me in the panel, I was at HLTH, what do you do if the data you have is wrong as a patient? And I'm like, the problem is even if you correct it in one system, if another system has that data, it's eventually going to send it to the other system. And it's going to be really challenging until we have a system or a mechanism where we can kind of control what's in that data from a central point of view. And we're nowhere near that today. There are ideas around that, but we're nowhere near that level of control of the data today.

Ryan Howells (44:50):

Yeah, a hundred percent agree. And what folks don't understand, and we don't have time to get into it here, but I would just say that the data is actually better protected outside of HIPAA in these voluntary protected environments with the care and code of conduct and other things than it is inside of HIPPA. And people think that inside of hipaa, it's like a lockbox and it's super protected. The answer is no, it's not. It's not. And what is protected is when it's person controlled, right? The person controls it, it's stored like Apple Health is stored in the hardware of your phone. There's digital identity associated with it. It's using modern technology. It's all consent based. It is way more protected consent based, privacy, security controlled than we have inside of HIPAA today. And we can learn a lot from what we've done, the care alliance and what other people have done and how to improve this. But you're right, if we ever want to realize the real value of AI, which is person-centric clinical decision support, then we have got to get to a stage where we can eliminate these artificial barriers that we've had. HIPAA has stood the test of time for sure in terms of what it's been able to do, but it's outlived its usefulness because now we're talking about real-time data exchange with the person. That's a whole different thing that wasn't even thought about back in 1994.

Charlie Harp (46:11):

Well, and I don't know about you, but I get three or four notices a year that all my data's been breached,

Ryan Howells (46:17):

Right?

Charlie Harp (46:18):

So it's another one of those things where it's, I just think it's time for us to take another look, but that's not something I have any control over. So we're kind of coming to the end of our time. You and I could probably talk about this stuff all day long and people could use it to not healthcare, people could use it to go to sleep. Stop horrific. Stop horrific. But is there anything else that you want to throw out there before we wrap up today?

Ryan Howells (46:44):

Well, some random hot topics that we're working on just really quickly. Okay. Number one, if you're looking to move to the CMS 0057 rule and do payment and operations using FHIR APIs, I wouldn't necessarily wait for TEFCA. I'd actually do that. We're actually doing that in the state of Utah and we're doing it in about a dozen other states where you could take advantage of the data use agreements you already have in place and actually get FHIR up and running far faster. So one is the hot take I guess is don't wait for TEFCA on this stuff. Actually figure out a way to do it locally with your HIE and with others first and then we can scale it nationally. Second thing is obviously quality measurement. If you're a payer and you're not thinking about digital quality measurement, you're probably behind and PIQI is going to be helpful for that. All the stuff we're doing with NCQA is going to be super helpful for that. If you're a health system and you are thinking about revenue cycle management, talked to a health system the other day and they said they have a thousand people employed in revenue cycle management, which is makes me sick to my stomach, Charlie. Not that they have a thousand people employed, but they have a thousand people employed doing that

Charlie Harp (47:52):

Because

Ryan Howells (47:52):

That task is, did I get paid what I was owed? Right? And it's like we should automate that and take those thousand people and put 'em into patient care. That's what we need to figure out a way to fix. And revenue cycle management is one of those sectors of the billion dollar sectors of the healthcare economy that shouldn't exist. So we have things like digital insurance card that's available, ready to go, that it's going to largely solve a lot of that big problem and killing the clipboard, you can read a lot of that stuff there too. Provider directory CMS is going to be able to build this provider directory, which is really cool. I guess the point here is that I think that we're in a stage right now where the last thing I'd say is we should collaborate more than we should compete. I think everyone is kind of realizing that this net zero sum game that we're playing in healthcare isn't going to work for anybody.

(48:50):

So let's start playing a non net zero sum game where everyone can win and we can work on problems that all of us think are problems and let's fix those and let's get all of that waste fraud and abuse hundreds of billions of dollars out of the system so that we can redirect that to better patient care and use all of these wonderful tools that we have today to make this a better experience for the patient, the provider and others that are a clinician that are helping with this. That to me, that's what gets me up in the morning. That's what I'd love for people to think about and let's start collaborating. Let's do more of the stuff that you and I are doing together, Charlie. It's just so much fun and it's needed for us to actually get real stuff done.

Charlie Harp (49:37):

I think that healthcare, for the longest time people look at us as an industry and say, why is it so screwy compared to everything else we've got everything else I can do on my phone. Why is healthcare so hard? And I always tell people, healthcare is hard. There's a lot of things that make healthcare harder than things like banking and supply chain. But I agree with you. I think we're at a point where we need to solve the interoperability problem. We need to solve and fix and stop the information blocking. And I kind of argue, I have this phrase I've been kicking around recently that bad data quality is passive aggressive information blocking. I think it's true. If you give me data and I can't use it, it's not like you really gave me data, you're still information blocking. But I think if we can do those things with the technology we have today, I think that we can fundamentally shift healthcare into catching up with the rest of what we do in technology and stop kind of being the laughing stock of the technology industries. I think it's time for us to pull together and even something as simple as interoperability. We have all these amazing technologies. Once we have the data and the data's good, imagine what we could accomplish in healthcare. If we could just solve for that. Let's do it.

Ryan Howells (51:01):

Let's go. I'm with you. I'm with let's go. Let's get on the train and let's get moving. Let's get to

Charlie Harp (51:07):

Work. Alright, well hey Ryan, thank you so much for being on the podcast and it's been a pleasure. It's a pleasure to work with you on the PIQI Alliance and on these other initiatives. Is there anything, if people want to get ahold of you, what's the best place for them to get ahold of you on any of these initiatives?

Ryan Howells (51:22):

Ping me on LinkedIn and happy to have a call with any, I have calls with everybody and anybody. I love talking to people, as you know, it's super fun. I'm an extrovert in a lot of different ways and so it's just really exciting. But Charlie, pleasure was all mine. It's awesome.

Charlie Harp (51:37):

That's exactly how the Pope described you. Alright. thank you so much Ryan. Thank you folks for listening. I'm Charlie Harp and this is been the Informonster podcast.