In Episode 56 of the Informonster Podcast, Charlie Harp sits down with Matthew Rahn, Director of the Standards Division for the Office of the National Coordinator for Health Information Technology (ONC), to discuss the evolving landscape of U.S. healthcare data.

Rahn shares his journey into healthcare, explores the evolution of the United States Core Data for Interoperability (USCDI), and discusses the ONC’s new FHIR-enabled terminology service, Cartos.

Their conversation also explores the growing importance of data quality, the role of FHIR in empowering meaningful data exchange, and the opportunities ahead in making data more useful within healthcare.

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Transcript

Charlie Harp (00:09):

Hi, I’m Charlie Harp, and this is the Informonster Podcast. And today on the Informonster podcast, I have the one, the only Matt Rahn from ONC here to tell us a little bit about himself, his journey in healthcare, and what’s going on at ONC. Matt, welcome.

Matt Rahn (00:26):

Thanks, Charlie. I appreciate you having me. I’ve seen the list of the previous folks on the podcast and I’m honored to be part of it. So thank you.

Charlie Harp (00:37):

Glad you’re here. So for the listeners who may not be aware of everything that’s going on in the ecosystem, can you talk a little bit about what you do and where you work today?

Matt Rahn (00:51):

Yes. So I currently work at the Office of National Coordinator for Health IT in the U.S. at U.S. Department of Health and Human Services. I’ve been at ONC since 2011, so not as long as Steve Posnak, who’s been there since its inception, but I’m up there. It’s been an amazing journey and I’m still here, so very much feel like we have a lot of things to accomplish still. But my background is I have a degree in public health from the University of Arizona. I started at Health Resources and Services Administration in the government, and I worked at the Office of Legislation there. And one of my portfolios did have to do with health IT. And so I knew a little bit about it, but not a ton. And then one of my colleagues went to ONC because they had just put out the high tech funds and were looking for some other feds to do some details over there.

(01:56):

And I saw a position pop up and I kind of followed my friend to ONC. But getting to HHS was random, I would say. I graduated in 2006. Now everyone knows how old I am. And I did a little stint in Boston for a few months and I ended up being in DC and I met somebody who’s now one of my best friends worked at HHS. And in my mind, I was always like, “Well, I just want to work at WHO or HHS.” I had no clue what that meant. I had no clue. And I somehow met someone who works at HHS and then they ended up helping me get a job. And now I still work with that person to this day. And I’ve also worked in some capacity with WHO folks in our global digital health partnership space. But yeah, it’s one of those things that you find everything happens for a reason, I feel.

(03:06):

And somehow the people I met got me to where I am and luckily I’ve been able to work with some awesome people at ONC and still have some awesome things to do. So hopefully it covers a little bit of my background, but it’s kind of random, but we made it here.

Charlie Harp (03:23):

Well, no, I think that it’s interesting how many people in healthcare… There’s so many relationships in our ecosystem in healthcare. I would assume other industries are like this, but it’s amazing to me the number of connections, the number of people. And the thing about what we do in healthcare is it’s hard. What we do in healthcare, not to… I’m sure people in other industries are rolling their eyes, but it’s a critical market. It impacts people’s lives in a meaningful way. It’s not something that you can necessarily disrupt or turn on a dime because it’s so critical. And yet there are so many people in all the different flavors of the standards community and AMIA and public service and all these things that are so passionate. And even though, for example, I could be a Angry Birds billionaire as an engineer if I really had been focused, but healthcare is where I landed and healthcare is kind of where I really like to be.

(04:25):

So it’s always cool when you hear those stories about how people get connected and they end up… You find a way to work together, you gravitate together. And it’s really cool that that landed you in a place where you get to work with a lot of cool people and you get to have a lot of impact on the actual world. That’s pretty awesome.

Matt Rahn (04:43):

Definitely. I just surround myself with people that are way smarter than me.

Charlie Harp (04:47):

Hey. We should form a club.

Matt Rahn (04:53):

I mean, you said it though. I mean, we wouldn’t be in this space if we weren’t passionate about improving the healthcare of people in general. So very much, I think all the work we’ve been doing is to help with that.

Charlie Harp (05:11):

All right, Matt, thanks for sharing that. But it is tradition on the Informonsteraster podcast for me to ask my guests. Give me some kind of a fun fact that people wouldn’t expect about you.

Matt Rahn (05:23):

Oh, that’s a tough one, but luckily I listened to your previous podcasts and so I knew this question was coming. So one thing that people may not know about me is for the past 15 years, I ride my bike from DC to Dewey Beach to support awareness for autism research. It’s called Bike to the Beach, but we get up in the morning in June and we ride our bikes all day. Takes about six or seven hours to get there. I’ve done it 15 straight years. I don’t plan on stopping. I plan on going as long as my legs will move. It’s a hundred miles, just over a hundred miles, and we’ve raised over $30,000 for autism research and awareness. And so this is my opportunity to thank all the people that have donated, friends and family, because obviously I wouldn’t have been able to do that without them, and it’s awesome to have that support, but it’s one of my favorite days of the year.

(06:29):

Look forward to it all the time. But 15 years is a long time, but I’m hoping to at least get to make it drinking age.

Charlie Harp (06:40):

Well, that’s fantastic. I have a son who is on the spectrum. He’s high functioning, he’s fantastic. Autism can be very difficult for folks to deal with, so thank you for doing that. We’ll have to have you on approaching that next year and we’ll try to get a bunch of people donate, see if we can beat the record.

Matt Rahn (07:03):

Thank you so much. No, it’s great. It’s been a great cause.

Charlie Harp (07:07):

So there’s a couple of things I though we’d talk about today, the first of which is the USCDI, because we’ve got USCDI 3.1, you guys just rolled out the USCDI seven, and we’re getting feedback on that. You’ve been around for a while. Can you want to give some perspective on USCDI and why we’re doing USCDI?

Matt Rahn (07:33):

Yeah, so in the 21st Century Cures Act passed by Congress, they actually required us to do USCDI. However, we had been doing a version of USCDI through policy with the common clinical data set, and that had the basic things that you would need, problems, allergies, meds, immunizations, you name it, and very high level. But when we created USCDI, that allowed for us to create a ongoing iterative process to update different to newer versions based on regulation or through another mechanism called standards version advancement process to raise that baseline. So USDI version one was the baseline in 21st Century Cures Act, which when we put out the Cures Act final rule, which is the baseline set of data used for access and exchange and use. That’s just the baseline for products. They have to provide that to hospitals and providers so that they’re able to access and exchange and use patient data for patients.

(08:48):

And now that was in 2020, I think May 2020, and now we’re at October 2026 and we’re in the draft version eight cycle. So we just put out version seven and there’s some key activities that have been going on over that timeframe, like you mentioned 3.1. Well, that was included in our HTI one regulation and now obviously I can’t speak about it, but in the unified agenda, it did say we’re working on HTI six. So we’re looking at ways we can raise the floor a little bit and add some data that does help improve patients’ lives, improves the opportunity for doctors to be able to make the best decisions for patients with more data and in a more streamlined way. I know you didn’t ask about it, but moving from where we were six years ago when it was the first time that we actually required that a FHIR API standard be used to exchange USCDI to now we have a newer version of that US core standard and before that we’re still using CCDA, but that’s like a blob of data.

(10:12):

And unless you have an amazing UI that you’re using to structure that data in your interface, then it makes it kind of difficult to go through those things. So with FHIR, you’re able to grab the last three months of the allergies or whatever data you’re looking for in a set amount of time. So I know I kind of went all over there, but

(10:38):

In a sense, the policy is then enacted by the standard itself, which we see as USCDI as a data policy.

Charlie Harp (10:47):

I think that one of the things that I’ve observed over the last… I’ve been doing this a long time, but since the meaningful use initiatives came out, there really is this idea of how do we get the data from one place to another in a way that is useful, not just for the provider, because you can overwhelm a provider with a bunch of PDFs. Providers experience time famine. They don’t have an hour to read through 1800 pages of PDF. So part of the whole idea is we have these systems that can use software to automate and basically accelerate their ability to come to decisions, and AI just takes that to a whole new level. And the idea really, and one of the reasons why I’m a big fan of what you guys are doing with USCDI and meaningful use and all the initiatives around FHIR are if we can get to a point where we’re sharing data that we can actually trust and consume and use so that the software can augment the human provider and improve outcomes for the patient, we need to get there because right now I think we’re still pushing things around that we really can’t take advantage of.

(12:03):

And the goal is not to let, whether we’re talking about TEFCA or an HDU or an HIE be more of an artistic success, the data has to be consumable, the data has to be usable. And I think you guys do a lot by saying… In fact, one of the things that inspired me when I started working on PIQI was I’m like, “Well, if we’re going to do a thing around data quality, do we have something we can look at that kind of says here’s what the quality should be?” And it was USCDI version three at the time because it creates a shared perspective of this is what we need you to do. And without that, we end up in the place we were where everybody’s sharing whatever the heck they have. And to me, sharing bad data or poor data is no different than not sharing anything at all.

(12:51):

It’s just kind of passive information blocking. So I think it’s great what you guys are doing.

Matt Rahn (12:57):

No, definitely. And you mentioned PIQI and love that you’re using USCDI as your version three as your baseline. Obviously I’ll push to let’s do V6 and V7. We’re

Charlie Harp (13:12):

Working on it. We’re working on it. I

Matt Rahn (13:14):

Know you are. I know you are. But that at least gives you a level set of like, “Hey, this is what we’re expecting to see exchange.” And you mentioned PIQI, which we’re very supportive of the improvement of data quality. I’ll give a little plug to a project that maybe had inspired somewhat of PIQI was the CCDA scorecard, which we still have up and running. But we did actually create some rubric that we balloted informatively through HL7. And that actually, I was looking at it. I’m sure you had a ton of feedback on your ballot for PIQI, but I think we had 160 comments and it was an informative document, so people were very interested in it. However, that does push towards getting better data. I was very happy to see PIQI and the focus around getting FHIR data to be better. I’ve been hoping that we’d be able to utilize some of that modeling into a future testing possibly in Inferno.

(14:36):

We’ll see, but I’m not going to commit to that right now. No, that

Charlie Harp (14:40):

Would be awesome. Those are

Matt Rahn (14:40):

The types of things that we’re looking at because we know that there’s issues. Data quality is a huge thing because if the doctor doesn’t actually get the data in a way that he needs to, they’re probably not going to use it. And then they could be duplicating tests or something like that.

Charlie Harp (15:04):

I mean, from a financial perspective, from a outcomes perspective, and one of the things I think has been a real tailwind for people thinking about data quality is all these AI initiatives and people realizing that when you train AI on chunky data and when you prompt AI with chunky data, you get artificial stupidity instead of artificial intelligence or super stupidity instead of super intelligence. But I think that one of the things that has been really helpful is if we didn’t have the plumbing… So it’s one of those things where we could talk all day long about data quality and this and that, but if we didn’t have the plumbing, if we didn’t have the physical interoperability and the syntactic interoperability, we’d be in trouble. And the wonderful thing about where we are right now is the roads are paved. We know what the trains look like and fire deliver the payload.

(16:07):

Now we just need to make sure that what we’re delivering is useful. And I think that we’re lined up to take advantage of this because even though it’s important for AI and it’s important for digital quality measures, I go back to my history doing decision support and evidence-based medicine and say that it’s also important just for the provider to get good, clean, relevant data so they can make decisions without having to sift through and try to find it in some kind of a PDF viewer. So it’s exciting time.

Matt Rahn (16:37):

Yeah, totally. And I mean, Dr. Keen’s been talking, who’s a national coordinator, has been talking a lot about getting the information flowing. If you look at some of our regulatory levers we’ve been pushing over the last 10 years, it’s really setting the foundation, but now we’re at a point where this data is starting to flow. How are we going to actually make it useful for the patient and the provider? And then even at a higher level, how do you use that information to make better decisions for your hospital or from a public health perspective, what areas of the country are actually seeing prevalence of some disease or not? Do we put resources there in one part of the country over another because of these things? I think that getting the information flowing in a standardized way will help with that, which will also help the AIs.

(17:41):

They need actually good data to give us good report outs.

Charlie Harp (17:47):

Well, and what’s cool right now too is I’ve had several conversations with folks at CDC and CMS and ONC, and what’s interesting is I am seeing as an outsider, I’m seeing a convergence occur between those organizations because if we have a place where we can move data and if that’s a place that we can anonymize so that CDC can get the information they need without additional work there, and if we can leverage the stuff we’re doing so when people are trying to communicate information to CMS or even to the payers, I mean, if we can eliminate all this extra busy work that we do to satisfy all these things, whether in the future, it could be registries, it could be looking for clinical trial recruitment, once the super highway is built, then we can all use it like a utility instead of having to reinvent the wheel every time we have a use case.

(18:44):

I think a lot of the things that have been put in place since 2020 have built pretty effectively to getting us to that place. Now we just got to solve for the quality of the data, which I’m excited about the attention and about the conversation and the investment from the HL7 community, from the folks that have been plugged into the PIQI Alliance, and you guys have contributed a lot of brain power to help us with that, and so has the VA and other folks. So it’s very exciting.

(19:18):

So you want to talk about Cartos? You guys just rolled out this Cartos thing.

Matt Rahn (19:23):

Yeah, just a small thing. Yeah, no, I’d love to give a plug to Cartos. So a few years ago we were sitting in a room with HL7 leadership and including Graham Grieve, and he was like, “The US is really the only country right now out of the FHIR forward countries that doesn’t have a national terminology service.” He’s like, “You should consider doing.” So over the last couple years, we’ve been pondering and what that would look like, and we ended up actually doing it. And so Cartos is a name inspired by cartography, so mapping different code systems, value sets.

Charlie Harp (20:17):

So it’s not Carmella’s terminology service?

Matt Rahn (20:23):

I tried to name it that, but ultimately it didn’t make a ton of sense to focus it on one person, although she is the brain power behind it with the rest of the team that helped with that. We have a great team. Carmella’s been great and Liz Turry, they’re both from the ONC specific side helping us lead that, and they’ve done a great job getting that off the ground. Right now, we want people to use it. So everyone out there, especially developers, please use Cartos, Cartos.healthit.gov. It is our FHIR terminology service that focuses on this ONC certification program, terminology and value set code systems solely right now. In the future, that could be some advancement beyond that, but right now we’re just using this as an opportunity to see is this helpful? Will this help vendors get all the value sets in a quicker way?

(21:28):

Because right now it seems like there’s 30 different places you could go to get all the information you need to go through certification process. So we’re trying to streamline that, and we’ve been working very closely with our colleagues at NLM to help stand this up. So thanks for the opportunity to plug it.

Charlie Harp (21:48):

Of course. And I think when we went to the Birds of Feather, which was very well-attended Birds of a Feather at HL7, just for the listeners, ONC is very interested in getting feedback and they have a ticketing system, and if you have questions, if you have issues, just follow the links to the ticketing system and let them know. They seem very interested and invested, and they want your feedback.

Matt Rahn (22:13):

Exactly. If you haven’t done it, you can do if you think it’s amazing. None of the negative feedback can go public. Send that to the system. Positive feedback, please do it as public as possible. Exactly. I think that we think of it as an opportunity to help support our ecosystem, and if it can, then it’s something we’ll look at long-term support.

Charlie Harp (22:44):

So Matt, when you think about the next couple of years, what are you excited about at ONC? What are the things that you see coming down the pike that you think are going to make a big difference?

Matt Rahn (22:54):

Yeah, I mean, I think that… So Cartos has been fun, and I listened to a little bit of the podcast with John D’Amore who gave a plug to U.S. Patient Care Summary, which thanks to him and Gay and Brett and a bunch of other people that helped get that published, which is the U.S. version of International Patient Summary. I’ve been supporting that work over the past seven or so years. While ONC has been helping support the funding for providing resources for the actual standard itself, whether it be CDA or FHIR, we never really were in the IPS game, but now we’re finally in the game, and that’s a lot of credit to other countries that have been pushing it, and we want to make sure that there’s opportunities for us to figure out ways to be interoperable when we’re crossing borders and all that. So to answer your question, that’s one of the things, right?

Charlie Harp (23:59):

Yeah.

Matt Rahn (24:00):

Which is you have the data you need for that moment. You don’t need to have a million different types of data. You have your problems, allergies, medications, immunizations. If you need more, you can pull that data as you need. So that part, that’s exciting. I knew you were going to ask this and I had a different way of answering it, and now I’m answering it this way, but in a sense, Cartos has been very exciting, USPCS for sure. But going back to what I mentioned earlier is we have this data, we’re getting into flow. There are some advanced capabilities in the FHIR space that we haven’t really looked at requiring or providing a lever for to push adoption of them. When you think about some of the things that were proposed in our HTI2 regulation, and there’s clinical decision support activities, if there’s a subscription, just those types of things that might make base FHIR implemented, but what are the actual things we can build on top of that that are FHIR related that we can actually make this more usable for our patients and our providers?

(25:23):

So hopefully we can get that data moving. We can use this technology that has been super advanced to be able to utilize the data in a way that’s useful for everybody. But even right now, I would like this now, but a few years from now, I’d like it to be standard that I go to another country and something happens, I’ve got it on my phone, they can take with a QR code, they can scan it, and it’s got all my information they need just in case, God forbid, anything happened.

Charlie Harp (26:00):

It doesn’t seem like that tall of an order when you consider all the other things we can do, right?

Matt Rahn (26:04):

Oh, for sure. And we’ve been piloting this with the state of Washington for a while through our global digital health partnership activity where they’ve implemented a smart health link to a international patient summary. So shout out to Bryant and team there, but that was one way we’ve been trying to participate as much as we can from a US perspective in the IPS world because Canada, Australia, all of Europe, they’re in the IPS game, and I’m forgetting others, but there’s the Hodge use case, but we’re looking at ways to support this, and we had gone down a different path because a lot of these things didn’t really exist yet, but now they do, and we’re looking at ways to support that and get involved.

Charlie Harp (26:56):

I think it’s exciting, and I think it’s a great group of folks that work on the IPS stuff. I’m a big fan of what they’re doing. All right, anything else you want to share before we wrap it up?

Matt Rahn (27:08):

Anything else? Let’s see. Just really want to give a shout out to my team, and they’re the ones that make me look good, even the whole ONC team in general. I’m very fortunate to work with a bunch of smart people. They make my life a lot easier, but it’s a great place to work, and I’m very excited of what’s to come in future activities, and there’s still so much to do, and we’re looking forward to supporting the ecosystem to figure out best ways to do that, whether it’s with our government partners or external stakeholders.

Charlie Harp (27:53):

And from my perspective, I will tell you, and I’ll tell the listeners, it’s been a great pleasure for me to have had the opportunity to talk to the folks at ONC, even though Steve Posnick never ages, and it freaks me out a little bit. It’s been a great privilege to be on panels with Alison Kemp and be on calls with Vishali Patel and Sarah Armston, and really, and Matt, you, Molly, everybody at ONC. And what I want to say to the listeners is, if you’re at a conference or you’re someplace and you see people from ONC, they’re very approachable and they’re delightful to work with, so don’t hesitate. I’m a big fan, and I know a lot of us at AMIA, at HL7, we’re big supporters of what you guys do. What you guys do is critically important, so thank you. I don’t know if you hear it enough, but thank you from someone out in the ecosystem for the work that you guys do.

(28:52):

It’s important work.

Matt Rahn (28:53):

Yeah, I truly appreciate that. And if those that are listening are interested in joining ONC, please reach out. We’re always looking for talented folks to join the team.

Charlie Harp (29:08):

All right, my resume’s going to hit tomorrow, so keep your eyes peeled. Please,

Matt Rahn (29:13):

Please. We have some amazing people. We can add some more.

Charlie Harp (29:19):

All right. All right. Thank you very much, Matt. Thank you all for listening. I’m Charlie Harp, and this has been another episode of the Informonster podcast. Take care.