WEBVTT
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[inaudible]
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I'm Charlie harp.
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And this is the info monster podcast today on the infer monster podcast.
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I'm going to be talking to folks from MITRE who are working with the a M code initiative.
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And with me today, I have Steve brought Carmella[inaudible] Carol McCumber from clinical architecture and Sean Shaquille from clinical architecture.
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So why don't we start with some introductions?
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Uh, Carol, hi
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McNamara.
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I am the EVP client services and my role I lead, um, client success and professional services.
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I also wear a hat NHL seven officially as a vocab co-chair and the vice chair of the April seven terminology authority.
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Sean.
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Hi, I'm Sean chief informatics officer with clinical architecture,
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And now our honored guests.
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Uh, Steve.
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Hi, it's a pleasure to be here.
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My name is Steve brought.
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I lead miters health standards and interoperability group, and also my HL seven hat is a program manager for the fire accelerator called codex, which we'll be talking about a little bit later today and Carmella.
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Hi, my name is Carmella and I'm an informaticist working with Steve and the health standards and interoperability group at MITRE.
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I have a long career working with EHR vendors and terminology vendors, and I also have an HL seven hat.
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I'm a co-chair of the vocab work group along with Carol.
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Well, I really appreciate everybody taking the time today.
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And, um, as I, as I mentioned before, the objective of the infer monster podcast is to, to inform the healthcare it community about things that are happening.
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And I thought one of the things will be really great is to kinda do a quick overview of how, um, codex and M code came about.
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What's the objective and, and kind of the history behind it.
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First, I should tell you a little bit about MITRE because that everyone knows knows us.
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I think the people at HL seven probably do, but MITRE is a not-for-profit.
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Um, we, uh, work only in the public interest and we run seven federally funded research and development centers, and that these are governed actually by federal regulations and certain things we can do.
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And can't do, we can't compete with other organizations.
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We can only work in the public interests.
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We don't sell products, we're not consultants, but we do do advanced research for the government, uh, advanced prototyping.
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We work on things like standards, which we'll talk about today.
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Uh, and also we help with government policy, including in the health space and procurements and things like that.
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But our department that Carmella and I are in focuses on is called open health services.
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And we really do focus on prototyping, advanced ideas and, and that's, that's a lead up to where I'm code came from it for everyone's information.
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M code is the minimal common oncology data elements.
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So we'll talk more about that, but, um, it all started five years ago when there was an idea of creating a prototyping, a standard health record for patients, and this would cut across all of health.
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It'd be longitudinal from birth to death, uh, including family history as well.
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And, uh, some of that work has started on that back about five years ago.
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And at some point probably in 2017, 2018, I said, this is just too, too big, a problem to bite off.
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So we decided to focus in the cancer space, um, originally on breast cancer staging, but then we decided let's, let's look at cancer and can we get as our interest in the community at a minimum, say less than a hundred data element standard, um, that's fire based, uh, that would be where the, those data elements were useful to for patient care and research across a wide range of envisaged use cases.
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So that's where M code kind of came out.
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And, um, another thing that might or likes to do is convene and bring together the right parties to make sure we're successful.
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And we were quite fortunate early on to partner with the American society of clinical oncology or ASCO and their president at the time.
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Monica Bertolli is also oncologist at Braman women and Dana Farber in the Boston area was good friends with our CTO at MITRE, who's out Jason insur.
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And he's also a medical, a medical doctor, which is quite interesting for an organization like ours.
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So, um, they got together to start talking a little bit about what we might be able to do together.
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And so ASCO was one of our first proponents and they have a huge community of 50,000 oncologists, uh, and they were able to muster a lot of interest in this, this idea of a minimal common oncology data elements that are early on.
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And so that's, that's where that kind of started and, and going, going back, of course, why cancer also, in addition to this fortuitous connection with between Monica Burton Olian and Jason knits are cancerous as a very serious disease.
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And research has made a lot of progress on prevention of cancer and also, um, remedies afforded as well, but still it's the number two killer in the world.
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Probably 40% of all of us are going to go to get cancer at some point in our life.
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It's also, of course, very expensive.
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It's painful can stay with a person for a long time.
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And we also know that everyone I'm probably listening to this podcast knows of all the problems or collecting data for anything but including cancer.
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I mean, figure 15, 20 million cancer patients today have their data in some electronic health record system, but almost little of it is structured.
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What's structured.
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Isn't standardized even within a health system and certainly for a patient who may span different providers and health systems or data can't be longitudinally, analyze or used for research for easily without a lot of work, a lot of expense and a lot of time.
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And we also think that this lack of standardized data for cancer care has other implications of a lot of focus now on health equity.
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And we know in places in the United States, for example, the level of cancer, breast cancer mortality, for example, um, Mississippi river area is about three times the mortality rate in places like Boston or California, uh, so care camp and the costs of care can vary a lot.
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So we believe also that by having more standardized patient data, not only can patients be cared for better on average, but also especially in areas where, uh, health equity is, is lacking.
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So stop me if you'd like, um, just a couple other things about M code.
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So we of course, are focusing on fire, fire implementation guides.
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That's why we will talk about the codex fire accelerator, I guess later.
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Uh, that's also been, uh, uh, something MITRE has been involved with in a long time, a long time.
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And we even developed a predecessor standard called H data, which was the first, I guess, restful, um, implementation for, for sharing health data and fire.
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I think drew drew from that quite a bit, I think we're working on 20 plus implementation guides now within HL seven, where M code is, is certainly one of them.
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And the fire is also, we're fortunate, chosen that, um, chosen that path because of course that would wreck federal regulations also leading to the requirement for health systems and payers to have open fire API APIs for patient data and claims data that's puts us right in the, in the sweet spot of what is being required of health systems as well.
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So that's, we're finding a lot of interest, uh, in M code in addition sort of a side interest is because of what we can learn more about fire implementation to working with this community.
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So there's a HL seven fire implementation guide, uh, and it set the standard for trial use level one or two, one, we're going to be balloting a stew too.
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That's, uh, we'll be bounded in the may timeframe.
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It will be sort of freezing no, the draft workout it's due to a, I think in April 11th.
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So we're exciting.
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The differences between Stu tunes do one.
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We could talk about if there's interest, but a lot of it was based on learnings with this HL seven fire accelerator called codex.
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We were able to start using them code for real use cases.
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For example, radiation therapy summaries is something that we have a lot of interest in from some of the big system, medical radiation, oncology societies, and health systems and vendors.
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And by pulling those experts together in that specific area, radiation treatment, um, we were able to, uh, see some areas where M code could use improvement.
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So those are the kinds of things that we really want to focus on is not just theoretical discussions of the, of the standards, but implementing them, learning what works and what doesn't work and fixing it with all the parties involved.
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So I stopped just, we have a large group of supporters.
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Now we tied to ASCO.
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We also have Astro American society of radiation, oncology, cancer link, NIH, FDA.
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We have about 20 plus health systems that we're working with on one or more of the use cases we have probably on the order of 10 vendors we're working with as well.
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And Epic is already been delivering code that supports the collection of some, a subset of the M code elements.
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We meet with them weekly.
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We really invite all, I think, leader leading vendors to come work with us and be part of this, uh, the work that we're doing, because I think it's important to have, uh, an increasing number of people at the table will feel a value that there's a value in M code who are leveraging it to do provide better care and research, lower costs and lower burden.
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So that's, uh, that's kind of where I'm code is.
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And I, I would like to tell you a little more about the codex accelerator too, but I'll stop there.
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And if there's any questions,
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I really appreciate the overview.
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It sounds like it's pretty fascinating.
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It sounds like you guys have gotten a lot of traction with it.
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So if I'm, if I'm somebody who to date is not, is not really familiar with, with M code.
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Um, and I'm one of those health systems is one of those EHR vendors.
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How could they get more involved in what you guys are doing?
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What's the best way for them to get more involved in what you're doing?
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Yeah, that's a good question.
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Um, it's hard to put URLs into podcasts, but we certainly have.
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I think that the best way to learn is through our monthly community of practice.
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Paul, this is a call where everyone's invited, there's no cost to it.
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There's no membership.
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You don't have to be a codex member to be part of it.
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Um, we meet the last Friday of every month except for November and December because of the holidays then, and, uh, at noon Eastern time.
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And if you go to HL seven.org/codex, you'll see, um, a link to our confluence pages and you'll see a community of practice feature there as well.
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And you can click register for the call.
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You'll get all the call information.
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The next one is the 26th of March.
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And then there'll be one at the end of April.
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So you always have really great speakers.
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Um, quite often, almost always they're speakers from the community or saying, here's what I'm doing with them code.
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And here's the challenges I'm having, or here's the successes we're having.
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And here's what we'd like to work with a white, you know, inviting other people to work with them.
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So, so that's, it's really exciting to see this it's uptake and interest in what we're doing.
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The community practices is a good way.
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If you go to the confluence page again, there's a whole bunch of information about all the use cases we're working on in codex, you can get a link, the link to the M code implementation guide itself.
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Um, you'll also be able to see from the implementation guide that draft that's coming out for Stu to, uh, so you can get a lot of information there.
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You can also always contact Carmella or contact me for more information.
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That's absolutely true.
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I spent some time in the last couple of days on your confluence pages.
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There's a lot of great information out there and will, I believe we can publish URLs when we publish the podcast.
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So if you're listening to this and you want to find the URLs, we'll, uh, we'll make sure we have good ones there that are available to you.
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I don't know if Sean Carroll or Carmel have anything else to say about Emco code before we move on to codex?
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No, I guess maybe it's a, it's a softball question.
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Imagine then a lead to Kodak.
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You know, Steve, you've been, you've been, you know, helping lead, you know, within the HL seven community for quite a long time.
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Um, you know, and I have been
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Around, you know, a decade here or even, um, what do you think it was, you know, about fire that made it possible for these, for the accelerator program to really emerge as a powerful, um, asset within the HL seven community to really accelerate things like codex and Karen and gravity and Divinci, and I'm sure I'm forgetting some of them, but it's something that's, that stands out as being unique to fire as a standard in comparison to some of the other HL seven standards of the past.
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Yeah, it's a good question.
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And it's not a softball question because I don't think it's that simple.
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Um, I've been in the standards world for a long time.
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I've only been in health standards for a short part of my career.
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I was the first CEO of the world wide web consortium.
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I've been involved in arms control standards, logistical standards.
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I've seen kind of how these things work and you all know that's not always the best technical or clinical solution that's adopted.
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It's getting, it's the one that the community gets around.
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And I think fire had for all the challenges that this poses, I think that the concept of being able to make something that's very implementable, that's very developer friendly is important.
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Them also focusing on core things or 80 20 principle and so on which, which for people in this world of a terminology world, it probably creates a lot of, uh, challenges as well, but it lowers the bar for entry.
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And that's where the accelerators come in too, because we can, we can work together with the other accelerators who are working on social determinants of health or who are working on research or prior authorization or, or, uh, other other areas.
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And we can work together to try to ensure that our different focuses are interoperable with each other because when it comes down to it, it's one patient.
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If cancer, they they're, they're part of a research trial or their, their social determinants are having a huge impact on their health is still a person.
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And so we want to make sure these things that are interoperable, and I think that fire Felder community is one place where that happens on the ground.
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You know, when you're really implementing stuff, you're building software, you're building reference implementations, you're testing and piloting, uh, in addition, and sort of supplements the traditional work of HL seven, working on at the standards level, uh, allows you to really kick the tires and test it out as well in the, in the accelerator world.
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So, um, yeah, it is, it is, uh, it's, it's interesting how I think this has all come together.
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The, the focus on fire, I think also the increased appreciation of health systems and researchers on standards and how that could really help facilitate their work, reduce the friction in the system of sharing data and leveraging data.
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I think as a result, the vendors are responding to, to their customers, whether the customers are health systems or registries, or other kinds of pharmaceutical companies for the need of, uh, appreciation for standards and fires kind of in the right place at the right time is like as a framework for, for sharing.
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That's got a low, low burden for implementation relatively.
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So that's my opinion though.
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I don't know if it's not softball question.
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It's a really good question.
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It's a tough question.
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I'm sure others on the call have other opinions about that.
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Do you want to talk a little bit more about codex?
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Did we mentioned it so many times up until now?
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Um, so Apotex is an HL seven fire accelerator.
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I believe there's six of them now.
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Um, and we were the third or second or third one in, and, um, we focus on creating a community that's really interested in implementation of M code and extension STEM code, uh, to help address improve cancer care and research.
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And Kodak stands for the common oncology data elements, extensions, um, what were extensions.
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It doesn't mean the traditional fire extensions.
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That really just means supplements.
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I'd say it'd be a better word for it.
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Um, supplemental data elements that may not be maybe very specific to some element of the cancer space, because we want to keep M code small.
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We want to keep them code stable and relatively small.
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I'm hoping, um, if we can get through publishing a stew to this standard for trial use to this year, maybe we can be normative sometime next year, then vendors have trusted it.
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They can count on it and that we could have additional, uh, implementation guides that leverage codex leverage other standards as well, and create new data elements that are necessary to work on new use cases.
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So codex is a place where we focus on use cases.
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We focus on development of implementation guides and implementation of those guides into products, commercial products, uh, open source project products, whatever you want to help the community, leverage this, to support their customers better.
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We want the customers to be there at the table to whether it's a health system or registry or other places.
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So we do focus on implementation, not just on delivering implementation guides and execution.
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So we have pilots, agile development and short cycles of maybe three or four month phases could be up to six month phases and testing, go back and make the fixes that we need to encode or other things.
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And we kind of already seen that with the work that's going on now to move M code into the standard for Kroll use to level.
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So that's what we're doing.
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The use cases I'll read off really quickly, um, that that are active on.
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Now.
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We have one around real-world data trials.
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This is the most mature one we're now in phase two of that one, working with the Alliance for clinical trials in oncology are actually executing three trials.
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Now collecting data in, in Epic and in M code elements and sharing them collect, aggregating them in a central place to ensure that the data collected out of the HR are complete and of high quality as those that were collected in the case report forms that are traditionally the locus of information collected during trials related to that, we have another use case integrated trials matching for cancer patients and providers.
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This tries to help speed the enrollment of patients and trials and speed the ability for patients to find trials.
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Again, I can questions about any of these things, if there's interest.
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Um, but working our champion, we call it, there is the American cancer society, eye cancer registry reporting, the CDC and another private registry called the center for international blood and marrow transplant research are our champions there.
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We're trying to demonstrate the capability again, of collecting the data in one place on EHR, and then sending it to different registries for sometimes very different purposes.
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Probably should've said that from the beginning, that is kind of our common focus is being able to collect the data once in the EHR, any HR and share it in a standard way for different use cases.
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So those use cases are all what we call an execution.
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That means we're in, into phases, we're building stuff, we're testing stuff.
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And we have a couple of others that are in planning stages, a radiation therapy treatment.
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We've got the biggest, um, the biggest radiation therapy delivery system vendors like Barry Varian and Elekta and research working together to send a standardized report based on M code and other elements from their systems into the EHR in a structured way.
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Right now that's almost exclusively done with PDs.
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So getting this key structure data into the HR, right from these radiation oncology systems.
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So that's probably getting close to being an execution.
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Now we got all the right partners there, including the American society for radiation oncology, Astro, the American association of physicists in medicine who are kind of the brains behind a lot of the radiation work that's done AAPM and all the vendors.
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That's great.
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And then we're also working on a couple of others prior authorization.
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Can we leverage the work that the DaVinci HL seven fire accelerator has done, but focus on a very specific cancer use case.
00:19:24.750 --> 00:19:31.319
Carmel has been very active in that and also looking at clinical pathways or guidelines and how can we automate that using M code and other data?
00:19:31.859 --> 00:19:38.609
So these are the use cases are pretty well documented on our website and anyone who's interested in, I'm happy to share more on that
00:19:39.470 --> 00:19:41.390
Sounds was like the things that you guys are doing are pretty exciting.
00:19:41.391 --> 00:19:45.259
And I think that, you know, you said that comment earlier, why cancer?
00:19:45.710 --> 00:19:52.609
I don't know that I know anybody who hasn't been touched by or had somebody near them that's been affected by cancer.
00:19:52.611 --> 00:19:57.529
So I think it's, it's obviously a big issue in healthcare.
00:19:57.530 --> 00:20:06.920
And I also think that just like everything else in healthcare, you know, being able to get the data to organize the data in a, in a consumable computable way is half the battle.
00:20:06.921 --> 00:20:10.579
If you can do that, then you can start to do things that we've been trying to do in healthcare.
00:20:10.580 --> 00:20:15.380
It forever one of the big challenges that I think people struggle with with standards.
00:20:15.559 --> 00:20:22.400
And it sounds like you guys are doing a really good job to mitigate that is that, you know, healthcare evolves from the edges.
00:20:23.119 --> 00:20:33.769
Um, it's, it's kind of hard to create something, you know, authoritatively centrally and say, this is how everything's gonna work because healthcare is, is a very living dynamic, evolving space.
00:20:34.130 --> 00:20:42.619
And it sounds like with what you're doing with codex, you're involving people to kind of help evolve what you're doing based upon those things that are happening at the edges.
00:20:42.621 --> 00:20:50.529
So it sounds like it's really well, well situated to have a meaningful impact where we're going in addressing this issue in healthcare.
00:20:50.559 --> 00:20:54.609
So it's very cool stuff at the center of anything like this.
00:20:54.611 --> 00:21:06.430
So, you know, whenever you talk about fire, you talk about standards, you've kind of got this canonical, you know, standard and the patterns that you establish and then you have the semantic standards.
00:21:06.670 --> 00:21:22.509
And so what I like to do is kind of pivot from, you know, talking about the, some of the canonical things that are happening and the use case things, and talk about some of the terminological ontological things that you guys are doing, and you're putting together as semantic targets for M code.
00:21:23.079 --> 00:21:27.849
And, uh, I don't, I don't know if Carmela, if you'd like to talk a little bit about that.
00:21:29.369 --> 00:21:29.369
Hmm.
00:21:29.730 --> 00:21:31.380
Trying to think where to start there.
00:21:32.220 --> 00:21:35.160
Can I ask a leading question to, to maybe help with that?
00:21:35.670 --> 00:21:35.670
Sure.
00:21:36.210 --> 00:21:38.789
What is the, what is the scope of M code?
00:21:38.910 --> 00:21:44.609
So, you know, as Charlie mentioned, you know, there's sort of the defining data elements, so there's sort of some tactical level.
00:21:44.611 --> 00:21:46.079
These are all the things we care about.
00:21:46.619 --> 00:21:50.039
And then there's the, you know, trolls, your printers, the semantic level.
00:21:50.040 --> 00:21:56.039
So, you know, how do you effectively encode all that data so that it's interoperable.
00:21:57.180 --> 00:22:00.930
Um, what is the full scope of M codes, um, efforts there?
00:22:01.109 --> 00:22:03.420
Is it syntactic and semantic?
00:22:03.430 --> 00:22:13.440
Are you actually building out terminology and, you know, to address the mantic level, inter-operability leveraging existing content helps understand that a little better
00:22:14.220 --> 00:22:20.099
M code, uh, at the beginning was, you know, was trying to define their scope.
00:22:20.101 --> 00:22:21.390
So that's a really good question.
00:22:21.839 --> 00:22:27.329
What they ended up settling on was, um, solid tumor cancers.
00:22:27.330 --> 00:22:33.509
So they common data elements around cancers that are, that involve tumors.
00:22:34.349 --> 00:22:53.279
And so say some elements that might be common for say, blood cancers are not included in M code right now, but that might be considered say an extension if that were use case that, uh, codex, uh, prioritize, we would maybe work on what's required.
00:22:53.940 --> 00:23:01.049
What kind of data is required to collect for, uh, say leukemia versus solid tumor cancers.
00:23:02.789 --> 00:23:25.019
Um, so that's one of the scoping issues that they took on also, um, from the get-go they're trying to use existing code systems where they could, and as you might imagine, there's some very specific code systems out there that address some of the cancer elements like staging systems.
00:23:25.500 --> 00:23:32.579
So there's different staging systems that exist that are used in different situations.
00:23:33.119 --> 00:23:37.980
A lot of, uh, implementations in this country use the AJCC.
00:23:38.460 --> 00:23:52.970
So the American joint committee on cancer, TNM staging system, which breaks down staging into a characterization of the tumor, whether nodes are involved and whether, um, there's missteps.
00:23:53.759 --> 00:23:57.410
And can't say that word, whether the cancer has metastasized.
00:23:58.700 --> 00:24:19.279
So they did approach the terminology requirements by trying to find existing code systems out there that were being used by different maybe professional societies or registries or, um, cancer applications.
00:24:19.280 --> 00:24:24.890
Like sometimes there's a specialty EHR is that, are there oncology HRS?
00:24:25.670 --> 00:24:30.650
So sometimes there's, there was code systems used in those implementations.
00:24:31.420 --> 00:24:35.349
So what does, what do you do is, you know, as M code, when you find a gap,
00:24:35.740 --> 00:24:36.970
That's a very good question.
00:24:37.000 --> 00:24:42.730
And then Steve mentioned that we're one of our very active use cases is radiation therapy.
00:24:43.420 --> 00:25:04.299
And, uh, we're looking at snow med for, to record, uh, radiation procedure, which is pretty complex when you start breaking it down and that you might have a, a general procedure, but then it's really qualified for, by two other procedures, which are the modality and the technique.
00:25:04.930 --> 00:25:11.170
And what we found is that snowman, which is the recommended in U S Corps.
00:25:11.171 --> 00:25:11.380
Now.
00:25:11.381 --> 00:25:26.529
So M code is built with us core as a base, but snowman and CPT are the code systems for all an ICD 10 PCs that are recommended in U S Corp for procedures.
00:25:27.250 --> 00:25:44.740
So when we started looking at mud modality and technique, we realized that snowman did not have full coverage say for the, for the modality and technique procedures that the, uh, subject matter experts felt were really necessary to have.
00:25:45.400 --> 00:25:57.819
So there was some back and forth in the team and some folks were advocating for a well, let's define a separate code system, all new codes, so that we can just have a complete code system.
00:25:57.820 --> 00:25:59.470
And that's what we'll use.
00:26:00.250 --> 00:26:03.250
Others did not agree with that approach.
00:26:03.279 --> 00:26:10.630
And we had some back and forth and, um, really good communication among the team about what approach to take.
00:26:10.631 --> 00:26:27.880
And we did really did a three 60 and decided to, uh, use snowman and to submit the missing concepts to snomad, you know, you first, you have to submit them to the U S release center, then they're considered, and they may go into the international release.
00:26:29.859 --> 00:26:47.039
And, you know, some of the issues there that, um, some vendors aren't, aren't using snomad and, uh, they start bringing up licensing issues and, you know, what would it cost to use nomad if they operate in countries that are not snomad member countries?
00:26:47.880 --> 00:27:08.910
So this is all these kinds of discussions we had and you take it into consideration when you're trying to figure out is the M code specification or one of the codex specifications going to roll their own and create a code system, or are we going to try to work with the code system stewards and supplement what's already there?
00:27:09.440 --> 00:27:09.619
Yeah.
00:27:09.621 --> 00:27:32.660
Which, which kind of leads to, to, you know, I think questions that, or issues that a lot of people are facing now, you know, with the rapid, with the acceleration of, um, the ability to create things like fire IGS and so on, you know, comes along with it, the need to be able to make these decisions about terminology and vocabulary usage within those ideas.
00:27:34.009 --> 00:27:40.519
Um, you and I have talked about how standards are in some ways having, having its glory moment we've emerged.
00:27:40.940 --> 00:27:58.400
Um, as some of you who've been this, the HL seven meetings know that vocab, the work group is often, um, uh, often a corner someplace, um, uh, in the, in the sub-basement as, as the trolls that are necessary to, you know, kind of keep the, keep the building, uh, standing up right.
00:27:58.401 --> 00:28:17.839
But often, um, troublesome, um, and we've kind of emerged from that, that position to being the, uh, uh, as, as Julie James has, has, has referred to the HTA sometimes as Cinderella, you know, as, as a, as kind of cleaning up and keeping things going, um, uh, but not ever kind of getting to be in the forefront.
00:28:18.049 --> 00:28:18.349
Right.
00:28:19.099 --> 00:29:14.359
But would that, with that in mind, I mean, you know, a tremendous amount of progress has been made, um, via things like the unified terminology governance project, um, within atrial seven, to try to put some structure and process around, um, the, the, the maintenance of internal HL seven, um, vocabulary, um, you know, the, the gender harmony project that's looking at, you know, finally capturing the difference between sex and gender identity and sex for clinical use in a meaningful way where atrial seven has been able to bring together, you know, not only standards development organizations, but international participants, EHR vendors, um, the radiology folks, um, all together to talk about terminology and, and how it has a direct impact on the quality of the data and the outcomes for patients.
00:29:15.740 --> 00:29:28.700
Um, you know, we are seeing a emergence of tools that help within the HL seven community to do validation of things like code system identifiers, make sure people are referencing the versions correctly and so on.
00:29:29.779 --> 00:29:36.380
Um, and as you guys have talked about, you know, did the fire IGS there being an in fire in general being referenced in federal mandate.
00:29:37.400 --> 00:29:41.349
Um, but with that comes comes a different sense of urgency.
00:29:42.039 --> 00:30:07.630
A need for speed is as you've coined in other conversations, and that doesn't necessarily align with the traditional terminology offering and maintenance process that we've been used to, right, as you described for you identify a concept, if you're using snowman, you enter it into, if you're, if you remember country, you enter it into your national release center process, it has to get reviewed.
00:30:08.109 --> 00:30:12.190
You get an answer there's mitigation about, you know, the definition of things.
00:30:12.640 --> 00:30:19.720
Then it maybe ends up in your addition, and perhaps it ends up in the, in the core, all of that takes time.
00:30:20.829 --> 00:30:35.920
Um, and we don't always have it, you know, I, you know, in my role at the HDA, you know, worked with the Karen folks to ensure that their code systems were being identified in reference accurately, um, under a very tight timeline, right?
00:30:36.190 --> 00:30:41.170
Th that, that is being referenced in a CMS Rex.
00:30:41.500 --> 00:30:43.269
And so they had to get, we had to get it done.
00:30:43.660 --> 00:30:45.099
Um, and that isn't always easy.
00:30:45.910 --> 00:30:52.359
So, you know, I I'd be interested to hear from you or Andrew or Steve, you know, kind of, how do you find that sweet spot?
00:30:53.980 --> 00:31:04.329
Um, you know, what is the sweet spot between being able to efficiently do this, um, and making sure that the right terminology best practices are followed in terms of the creation of that content.
00:31:05.140 --> 00:31:06.460
Um, how do we get there from here?
00:31:07.470 --> 00:31:38.700
Some of it is to somehow change the mindset or enhance the mindset of folks who are in developing these ideas, uh, to start thinking about terminology and your terminology requirements at the beginning, rather than having it be an afterthought and, um, which it sometimes is as, as we've seen many times, uh, so somehow educate the community.
00:31:38.701 --> 00:32:00.839
And when I say the community, I guess I'm thinking of the, the HL seven community, the folks outside of HL seven, that are developing, um, implementation guides and have the material prepared to help them understand why it's important to, to think about your terminology artifacts at the beginning of your cycle.
00:32:01.380 --> 00:32:04.410
And what's available there to help you.
00:32:04.440 --> 00:32:07.289
You know, it's not a mountain that you have to climb by yourself.
00:32:08.250 --> 00:32:38.190
Um, there are these groups out there like HTA, which is the HL seven terminology authority that helps you discover or URLs code system identifiers for those code systems that are managed by an organization other than HL seven, like snowman or LOINC, or some of the new ones were coming across in the encode code space that we just have an HL seven hasn't identified yet.
00:32:38.839 --> 00:33:05.089
And, um, well, not identify that didn't sound quite right, but maybe they don't have a, um, a known identifier, an ex, uh, endorsed, or sometimes we use the word authoritative identifier provided by the code system owner, like AJCC for, um, the staging system, you know, up to this point.
00:33:06.109 --> 00:33:14.539
Um, we did not have a communication open with that organization to say, well, what would you like to use as your code system identifier?
00:33:14.540 --> 00:33:16.549
What would you like the community to use?
00:33:18.920 --> 00:33:25.369
So I think it's a kind of a culture change to try to, and that's going to be difficult.
00:33:26.210 --> 00:33:42.890
Um, especially when a lot of IGS fire ideas are developed by, uh, consulting companies who maybe aren't, uh, HL seven members, they might not be steeped in the culture of how things, how things are done.
00:33:43.460 --> 00:33:49.130
Our documentation is sometimes isn't as easy to use as we might like.
00:33:49.910 --> 00:34:04.759
It's getting better, just Boda created some great, uh, YouTube videos on how to use UTG, the unified terminology governance and their car gutted towards whether you're submitting or you're doing some other tasks.
00:34:05.539 --> 00:34:16.099
So it's, it's getting there, but I think it's, um, sometimes it feels a little disjoint how HL seven is approaching it because it's a big problem space.
00:34:16.219 --> 00:34:18.949
And it's, it's a lot to, it's a lot to cover,
00:34:20.019 --> 00:34:21.159
Uh, CML, a really good girl.
00:34:21.210 --> 00:34:21.820
You good thoughts too?
00:34:21.869 --> 00:34:22.019
Aye.
00:34:22.360 --> 00:34:22.360
Aye.
00:34:22.480 --> 00:34:22.679
Aye.
00:34:22.780 --> 00:34:23.190
Aye, aye.
00:34:23.199 --> 00:34:24.400
Something they add when you're done.
00:34:25.150 --> 00:34:30.340
If you don't mind, I'm not as steeped in HL seven or in health standards.
00:34:30.389 --> 00:34:41.889
As most of the rest of the people, Paul are, shouldn't have been surprised, but it is surprising even within oncology, certain kinds of disciplines have been working in their own silo for a long time.
00:34:42.070 --> 00:34:49.030
They didn't have to be interoperable because all you needed is for some care coordinator or oncologist to be able to read a report.
00:34:49.179 --> 00:34:55.630
And they kind of know what, how radiologists talk and how radio radiation, oncologists talk and how surgical oncologist talk.
00:34:55.630 --> 00:34:57.219
And they know that's all just talk.
00:34:57.221 --> 00:35:09.789
And so we're putting a new stress on the system that necessary for us all to talk the same language, you know, in the U S and they have six official languages, and they have interpreters that are working really hard to translate it.
00:35:09.809 --> 00:35:13.960
Even it changed, translate from one language to another, to another, and to make that work.
00:35:14.139 --> 00:35:17.889
And, and, uh, healthcare is a lot more complicated than language, I think in most cases.
00:35:18.699 --> 00:35:22.960
So even body state was one that came up last week of radiation oncology.
00:35:22.960 --> 00:35:26.079
They've talked about where are you putting instrument?
00:35:26.110 --> 00:35:33.550
And from outside of the body, what's the organ or part of the inside of the body, the mass inside the body that you're trying to target.
00:35:34.510 --> 00:35:38.699
Um, and you need to have a terminology for those and some kind of a code system.
00:35:38.701 --> 00:35:41.010
And they they've had things like this too.
00:35:41.010 --> 00:35:45.780
They've developed things like this on their own, but surgery, you also need to know where are you?
00:35:46.320 --> 00:35:47.159
Where's the incision?
00:35:47.161 --> 00:35:49.530
And where's the, you know, what are you trying to get at?
00:35:49.530 --> 00:35:56.400
And I guess every single subdiscipline of health has something about body site, part that's part of it's a vocabulary.
00:35:56.400 --> 00:36:02.340
So just how do you get people who have spoken their own language for a long time to agree?
00:36:02.340 --> 00:36:03.300
We need a common one.
00:36:03.300 --> 00:36:03.989
That's not easy.
00:36:04.380 --> 00:36:16.650
Um, and we'll probably end up having the compromise in some short term with mappings and things, but, um, the benefit of working with different disciplines within an accelerator, at least as you have those people, at least in the same community.
00:36:16.650 --> 00:36:19.949
And there's an opportunity to see if we can align.
00:36:20.519 --> 00:36:25.500
And we may find that this case is where we can, but we have to do we have to do our best.
00:36:26.429 --> 00:36:44.909
Well, that wraps up part one of our interview with Carmela Kadeer and Stephen brah from MITRE on M code and codex, and invite you all to listen into part two where we'll get more into some of the complexities and challenges around sharing data across silos and healthcare.
00:36:45.599 --> 00:36:52.710
I want to say once again, thank you very much for the folks that participated today and thanks to all of you for listening.
00:36:52.769 --> 00:36:57.000
I am Charlie Hart, and this has been the monster podcast.
00:37:08.480 --> 00:37:08.480
[inaudible].
00:00:10.050 --> 00:00:10.050
[inaudible]
00:00:10.609 --> 00:00:11.359
I'm Charlie harp.
00:00:11.361 --> 00:00:14.839
And this is the info monster podcast today on the infer monster podcast.
00:00:14.840 --> 00:00:20.480
I'm going to be talking to folks from MITRE who are working with the a M code initiative.
00:00:20.960 --> 00:00:29.480
And with me today, I have Steve brought Carmella[inaudible] Carol McCumber from clinical architecture and Sean Shaquille from clinical architecture.
00:00:30.140 --> 00:00:31.879
So why don't we start with some introductions?
00:00:32.240 --> 00:00:33.170
Uh, Carol, hi
00:00:34.070 --> 00:00:34.070
McNamara.
00:00:34.149 --> 00:00:42.320
I am the EVP client services and my role I lead, um, client success and professional services.
00:00:42.530 --> 00:00:50.780
I also wear a hat NHL seven officially as a vocab co-chair and the vice chair of the April seven terminology authority.
00:00:51.619 --> 00:00:51.619
Sean.
00:00:51.679 --> 00:00:55.670
Hi, I'm Sean chief informatics officer with clinical architecture,
00:00:55.880 --> 00:00:57.289
And now our honored guests.
00:00:57.679 --> 00:00:58.340
Uh, Steve.
00:00:58.969 --> 00:01:00.229
Hi, it's a pleasure to be here.
00:01:00.231 --> 00:01:01.159
My name is Steve brought.
00:01:01.250 --> 00:01:14.480
I lead miters health standards and interoperability group, and also my HL seven hat is a program manager for the fire accelerator called codex, which we'll be talking about a little bit later today and Carmella.
00:01:14.900 --> 00:01:23.689
Hi, my name is Carmella and I'm an informaticist working with Steve and the health standards and interoperability group at MITRE.
00:01:24.500 --> 00:01:33.319
I have a long career working with EHR vendors and terminology vendors, and I also have an HL seven hat.
00:01:33.379 --> 00:01:37.549
I'm a co-chair of the vocab work group along with Carol.
00:01:38.010 --> 00:01:40.219
Well, I really appreciate everybody taking the time today.
00:01:40.221 --> 00:01:50.269
And, um, as I, as I mentioned before, the objective of the infer monster podcast is to, to inform the healthcare it community about things that are happening.
00:01:50.480 --> 00:01:59.689
And I thought one of the things will be really great is to kinda do a quick overview of how, um, codex and M code came about.
00:01:59.810 --> 00:02:02.719
What's the objective and, and kind of the history behind it.
00:02:04.010 --> 00:02:07.640
First, I should tell you a little bit about MITRE because that everyone knows knows us.
00:02:07.641 --> 00:02:11.840
I think the people at HL seven probably do, but MITRE is a not-for-profit.
00:02:12.259 --> 00:02:22.340
Um, we, uh, work only in the public interest and we run seven federally funded research and development centers, and that these are governed actually by federal regulations and certain things we can do.
00:02:22.550 --> 00:02:25.129
And can't do, we can't compete with other organizations.
00:02:25.550 --> 00:02:27.229
We can only work in the public interests.
00:02:27.230 --> 00:02:33.680
We don't sell products, we're not consultants, but we do do advanced research for the government, uh, advanced prototyping.
00:02:33.681 --> 00:02:36.259
We work on things like standards, which we'll talk about today.
00:02:37.219 --> 00:02:43.400
Uh, and also we help with government policy, including in the health space and procurements and things like that.
00:02:43.401 --> 00:02:48.439
But our department that Carmella and I are in focuses on is called open health services.
00:02:48.441 --> 00:02:58.789
And we really do focus on prototyping, advanced ideas and, and that's, that's a lead up to where I'm code came from it for everyone's information.
00:02:59.080 --> 00:03:01.840
M code is the minimal common oncology data elements.
00:03:02.710 --> 00:03:11.469
So we'll talk more about that, but, um, it all started five years ago when there was an idea of creating a prototyping, a standard health record for patients, and this would cut across all of health.
00:03:11.610 --> 00:03:16.210
It'd be longitudinal from birth to death, uh, including family history as well.
00:03:16.629 --> 00:03:20.620
And, uh, some of that work has started on that back about five years ago.
00:03:20.621 --> 00:03:27.129
And at some point probably in 2017, 2018, I said, this is just too, too big, a problem to bite off.
00:03:27.759 --> 00:03:54.759
So we decided to focus in the cancer space, um, originally on breast cancer staging, but then we decided let's, let's look at cancer and can we get as our interest in the community at a minimum, say less than a hundred data element standard, um, that's fire based, uh, that would be where the, those data elements were useful to for patient care and research across a wide range of envisaged use cases.
00:03:55.449 --> 00:03:57.400
So that's where M code kind of came out.
00:03:57.430 --> 00:04:03.909
And, um, another thing that might or likes to do is convene and bring together the right parties to make sure we're successful.
00:04:04.389 --> 00:04:12.340
And we were quite fortunate early on to partner with the American society of clinical oncology or ASCO and their president at the time.
00:04:12.490 --> 00:04:22.569
Monica Bertolli is also oncologist at Braman women and Dana Farber in the Boston area was good friends with our CTO at MITRE, who's out Jason insur.
00:04:22.689 --> 00:04:26.500
And he's also a medical, a medical doctor, which is quite interesting for an organization like ours.
00:04:27.100 --> 00:04:30.790
So, um, they got together to start talking a little bit about what we might be able to do together.
00:04:30.790 --> 00:04:43.300
And so ASCO was one of our first proponents and they have a huge community of 50,000 oncologists, uh, and they were able to muster a lot of interest in this, this idea of a minimal common oncology data elements that are early on.
00:04:44.019 --> 00:04:57.040
And so that's, that's where that kind of started and, and going, going back, of course, why cancer also, in addition to this fortuitous connection with between Monica Burton Olian and Jason knits are cancerous as a very serious disease.
00:04:57.199 --> 00:05:05.829
And research has made a lot of progress on prevention of cancer and also, um, remedies afforded as well, but still it's the number two killer in the world.
00:05:05.860 --> 00:05:10.329
Probably 40% of all of us are going to go to get cancer at some point in our life.
00:05:10.930 --> 00:05:12.759
It's also, of course, very expensive.
00:05:12.761 --> 00:05:16.000
It's painful can stay with a person for a long time.
00:05:16.569 --> 00:05:22.990
And we also know that everyone I'm probably listening to this podcast knows of all the problems or collecting data for anything but including cancer.
00:05:23.110 --> 00:05:33.519
I mean, figure 15, 20 million cancer patients today have their data in some electronic health record system, but almost little of it is structured.
00:05:33.670 --> 00:05:34.089
What's structured.
00:05:34.091 --> 00:05:47.199
Isn't standardized even within a health system and certainly for a patient who may span different providers and health systems or data can't be longitudinally, analyze or used for research for easily without a lot of work, a lot of expense and a lot of time.
00:05:47.980 --> 00:05:55.600
And we also think that this lack of standardized data for cancer care has other implications of a lot of focus now on health equity.
00:05:55.629 --> 00:06:12.829
And we know in places in the United States, for example, the level of cancer, breast cancer mortality, for example, um, Mississippi river area is about three times the mortality rate in places like Boston or California, uh, so care camp and the costs of care can vary a lot.
00:06:12.831 --> 00:06:25.040
So we believe also that by having more standardized patient data, not only can patients be cared for better on average, but also especially in areas where, uh, health equity is, is lacking.
00:06:25.220 --> 00:06:29.439
So stop me if you'd like, um, just a couple other things about M code.
00:06:29.440 --> 00:06:33.670
So we of course, are focusing on fire, fire implementation guides.
00:06:33.730 --> 00:06:37.180
That's why we will talk about the codex fire accelerator, I guess later.
00:06:37.839 --> 00:06:42.160
Uh, that's also been, uh, uh, something MITRE has been involved with in a long time, a long time.
00:06:42.161 --> 00:06:51.879
And we even developed a predecessor standard called H data, which was the first, I guess, restful, um, implementation for, for sharing health data and fire.
00:06:51.880 --> 00:07:01.269
I think drew drew from that quite a bit, I think we're working on 20 plus implementation guides now within HL seven, where M code is, is certainly one of them.
00:07:01.990 --> 00:07:23.470
And the fire is also, we're fortunate, chosen that, um, chosen that path because of course that would wreck federal regulations also leading to the requirement for health systems and payers to have open fire API APIs for patient data and claims data that's puts us right in the, in the sweet spot of what is being required of health systems as well.
00:07:23.470 --> 00:07:31.990
So that's, we're finding a lot of interest, uh, in M code in addition sort of a side interest is because of what we can learn more about fire implementation to working with this community.
00:07:32.769 --> 00:07:43.269
So there's a HL seven fire implementation guide, uh, and it set the standard for trial use level one or two, one, we're going to be balloting a stew too.
00:07:43.329 --> 00:07:46.300
That's, uh, we'll be bounded in the may timeframe.
00:07:46.600 --> 00:07:51.100
It will be sort of freezing no, the draft workout it's due to a, I think in April 11th.
00:07:51.100 --> 00:07:52.750
So we're exciting.
00:07:53.290 --> 00:07:55.149
The differences between Stu tunes do one.
00:07:55.151 --> 00:08:01.629
We could talk about if there's interest, but a lot of it was based on learnings with this HL seven fire accelerator called codex.
00:08:01.630 --> 00:08:04.839
We were able to start using them code for real use cases.
00:08:04.841 --> 00:08:12.790
For example, radiation therapy summaries is something that we have a lot of interest in from some of the big system, medical radiation, oncology societies, and health systems and vendors.
00:08:13.269 --> 00:08:22.029
And by pulling those experts together in that specific area, radiation treatment, um, we were able to, uh, see some areas where M code could use improvement.
00:08:22.660 --> 00:08:33.340
So those are the kinds of things that we really want to focus on is not just theoretical discussions of the, of the standards, but implementing them, learning what works and what doesn't work and fixing it with all the parties involved.
00:08:33.341 --> 00:08:38.620
So I stopped just, we have a large group of supporters.
00:08:38.620 --> 00:08:39.789
Now we tied to ASCO.
00:08:40.240 --> 00:08:46.090
We also have Astro American society of radiation, oncology, cancer link, NIH, FDA.
00:08:46.360 --> 00:08:57.389
We have about 20 plus health systems that we're working with on one or more of the use cases we have probably on the order of 10 vendors we're working with as well.
00:08:57.480 --> 00:09:03.120
And Epic is already been delivering code that supports the collection of some, a subset of the M code elements.
00:09:03.330 --> 00:09:04.769
We meet with them weekly.
00:09:05.100 --> 00:09:24.450
We really invite all, I think, leader leading vendors to come work with us and be part of this, uh, the work that we're doing, because I think it's important to have, uh, an increasing number of people at the table will feel a value that there's a value in M code who are leveraging it to do provide better care and research, lower costs and lower burden.
00:09:25.080 --> 00:09:26.850
So that's, uh, that's kind of where I'm code is.
00:09:26.950 --> 00:09:30.450
And I, I would like to tell you a little more about the codex accelerator too, but I'll stop there.
00:09:30.539 --> 00:09:31.799
And if there's any questions,
00:09:33.049 --> 00:09:34.580
I really appreciate the overview.
00:09:34.639 --> 00:09:36.169
It sounds like it's pretty fascinating.
00:09:36.171 --> 00:09:38.149
It sounds like you guys have gotten a lot of traction with it.
00:09:38.779 --> 00:09:44.059
So if I'm, if I'm somebody who to date is not, is not really familiar with, with M code.
00:09:44.840 --> 00:09:48.649
Um, and I'm one of those health systems is one of those EHR vendors.
00:09:49.100 --> 00:09:51.950
How could they get more involved in what you guys are doing?
00:09:51.951 --> 00:09:54.259
What's the best way for them to get more involved in what you're doing?
00:09:54.440 --> 00:09:55.399
Yeah, that's a good question.
00:09:55.789 --> 00:09:58.850
Um, it's hard to put URLs into podcasts, but we certainly have.
00:09:58.879 --> 00:10:03.110
I think that the best way to learn is through our monthly community of practice.
00:10:03.889 --> 00:10:07.490
Paul, this is a call where everyone's invited, there's no cost to it.
00:10:07.519 --> 00:10:08.389
There's no membership.
00:10:08.390 --> 00:10:10.879
You don't have to be a codex member to be part of it.
00:10:11.179 --> 00:10:19.490
Um, we meet the last Friday of every month except for November and December because of the holidays then, and, uh, at noon Eastern time.
00:10:20.149 --> 00:10:29.720
And if you go to HL seven.org/codex, you'll see, um, a link to our confluence pages and you'll see a community of practice feature there as well.
00:10:30.230 --> 00:10:32.179
And you can click register for the call.
00:10:32.181 --> 00:10:33.500
You'll get all the call information.
00:10:33.529 --> 00:10:35.690
The next one is the 26th of March.
00:10:35.691 --> 00:10:37.129
And then there'll be one at the end of April.
00:10:37.130 --> 00:10:39.110
So you always have really great speakers.
00:10:39.440 --> 00:10:43.399
Um, quite often, almost always they're speakers from the community or saying, here's what I'm doing with them code.
00:10:43.909 --> 00:10:46.669
And here's the challenges I'm having, or here's the successes we're having.
00:10:46.671 --> 00:10:50.179
And here's what we'd like to work with a white, you know, inviting other people to work with them.
00:10:50.181 --> 00:10:55.009
So, so that's, it's really exciting to see this it's uptake and interest in what we're doing.
00:10:55.340 --> 00:10:56.840
The community practices is a good way.
00:10:57.440 --> 00:11:05.899
If you go to the confluence page again, there's a whole bunch of information about all the use cases we're working on in codex, you can get a link, the link to the M code implementation guide itself.
00:11:06.769 --> 00:11:13.700
Um, you'll also be able to see from the implementation guide that draft that's coming out for Stu to, uh, so you can get a lot of information there.
00:11:13.701 --> 00:11:18.710
You can also always contact Carmella or contact me for more information.
00:11:19.309 --> 00:11:20.149
That's absolutely true.
00:11:20.150 --> 00:11:23.179
I spent some time in the last couple of days on your confluence pages.
00:11:23.181 --> 00:11:28.549
There's a lot of great information out there and will, I believe we can publish URLs when we publish the podcast.
00:11:28.551 --> 00:11:34.429
So if you're listening to this and you want to find the URLs, we'll, uh, we'll make sure we have good ones there that are available to you.
00:11:34.850 --> 00:11:40.399
I don't know if Sean Carroll or Carmel have anything else to say about Emco code before we move on to codex?
00:11:41.000 --> 00:11:44.110
No, I guess maybe it's a, it's a softball question.
00:11:44.450 --> 00:11:45.529
Imagine then a lead to Kodak.
00:11:46.190 --> 00:11:52.279
You know, Steve, you've been, you've been, you know, helping lead, you know, within the HL seven community for quite a long time.
00:11:52.850 --> 00:11:54.250
Um, you know, and I have been
00:11:54.250 --> 00:12:25.779
Around, you know, a decade here or even, um, what do you think it was, you know, about fire that made it possible for these, for the accelerator program to really emerge as a powerful, um, asset within the HL seven community to really accelerate things like codex and Karen and gravity and Divinci, and I'm sure I'm forgetting some of them, but it's something that's, that stands out as being unique to fire as a standard in comparison to some of the other HL seven standards of the past.
00:12:26.820 --> 00:12:27.929
Yeah, it's a good question.
00:12:27.931 --> 00:12:30.720
And it's not a softball question because I don't think it's that simple.
00:12:31.049 --> 00:12:33.120
Um, I've been in the standards world for a long time.
00:12:33.120 --> 00:12:35.519
I've only been in health standards for a short part of my career.
00:12:36.000 --> 00:12:38.730
I was the first CEO of the world wide web consortium.
00:12:38.970 --> 00:12:42.240
I've been involved in arms control standards, logistical standards.
00:12:42.240 --> 00:12:50.190
I've seen kind of how these things work and you all know that's not always the best technical or clinical solution that's adopted.
00:12:50.191 --> 00:12:52.409
It's getting, it's the one that the community gets around.
00:12:52.440 --> 00:13:03.029
And I think fire had for all the challenges that this poses, I think that the concept of being able to make something that's very implementable, that's very developer friendly is important.
00:13:03.779 --> 00:13:18.840
Them also focusing on core things or 80 20 principle and so on which, which for people in this world of a terminology world, it probably creates a lot of, uh, challenges as well, but it lowers the bar for entry.
00:13:19.830 --> 00:13:31.919
And that's where the accelerators come in too, because we can, we can work together with the other accelerators who are working on social determinants of health or who are working on research or prior authorization or, or, uh, other other areas.
00:13:32.009 --> 00:13:39.299
And we can work together to try to ensure that our different focuses are interoperable with each other because when it comes down to it, it's one patient.
00:13:40.230 --> 00:13:47.399
If cancer, they they're, they're part of a research trial or their, their social determinants are having a huge impact on their health is still a person.
00:13:47.789 --> 00:13:54.450
And so we want to make sure these things that are interoperable, and I think that fire Felder community is one place where that happens on the ground.
00:13:54.539 --> 00:14:11.879
You know, when you're really implementing stuff, you're building software, you're building reference implementations, you're testing and piloting, uh, in addition, and sort of supplements the traditional work of HL seven, working on at the standards level, uh, allows you to really kick the tires and test it out as well in the, in the accelerator world.
00:14:11.879 --> 00:14:16.860
So, um, yeah, it is, it is, uh, it's, it's interesting how I think this has all come together.
00:14:16.860 --> 00:14:32.639
The, the focus on fire, I think also the increased appreciation of health systems and researchers on standards and how that could really help facilitate their work, reduce the friction in the system of sharing data and leveraging data.
00:14:32.940 --> 00:14:50.279
I think as a result, the vendors are responding to, to their customers, whether the customers are health systems or registries, or other kinds of pharmaceutical companies for the need of, uh, appreciation for standards and fires kind of in the right place at the right time is like as a framework for, for sharing.
00:14:50.280 --> 00:14:53.389
That's got a low, low burden for implementation relatively.
00:14:53.509 --> 00:14:54.950
So that's my opinion though.
00:14:54.970 --> 00:14:56.779
I don't know if it's not softball question.
00:14:56.899 --> 00:14:57.830
It's a really good question.
00:14:59.000 --> 00:14:59.809
It's a tough question.
00:15:00.230 --> 00:15:02.360
I'm sure others on the call have other opinions about that.
00:15:04.840 --> 00:15:07.179
Do you want to talk a little bit more about codex?
00:15:08.519 --> 00:15:10.330
Did we mentioned it so many times up until now?
00:15:10.779 --> 00:15:13.240
Um, so Apotex is an HL seven fire accelerator.
00:15:13.240 --> 00:15:15.580
I believe there's six of them now.
00:15:15.940 --> 00:15:33.279
Um, and we were the third or second or third one in, and, um, we focus on creating a community that's really interested in implementation of M code and extension STEM code, uh, to help address improve cancer care and research.
00:15:33.820 --> 00:15:40.000
And Kodak stands for the common oncology data elements, extensions, um, what were extensions.
00:15:40.059 --> 00:15:41.860
It doesn't mean the traditional fire extensions.
00:15:41.980 --> 00:15:43.629
That really just means supplements.
00:15:43.630 --> 00:15:45.159
I'd say it'd be a better word for it.
00:15:45.580 --> 00:15:52.539
Um, supplemental data elements that may not be maybe very specific to some element of the cancer space, because we want to keep M code small.
00:15:52.541 --> 00:15:55.330
We want to keep them code stable and relatively small.
00:15:55.331 --> 00:16:06.460
I'm hoping, um, if we can get through publishing a stew to this standard for trial use to this year, maybe we can be normative sometime next year, then vendors have trusted it.
00:16:06.460 --> 00:16:18.100
They can count on it and that we could have additional, uh, implementation guides that leverage codex leverage other standards as well, and create new data elements that are necessary to work on new use cases.
00:16:18.100 --> 00:16:20.259
So codex is a place where we focus on use cases.
00:16:20.799 --> 00:16:35.379
We focus on development of implementation guides and implementation of those guides into products, commercial products, uh, open source project products, whatever you want to help the community, leverage this, to support their customers better.
00:16:35.799 --> 00:16:39.970
We want the customers to be there at the table to whether it's a health system or registry or other places.
00:16:40.360 --> 00:16:45.100
So we do focus on implementation, not just on delivering implementation guides and execution.
00:16:45.100 --> 00:16:56.500
So we have pilots, agile development and short cycles of maybe three or four month phases could be up to six month phases and testing, go back and make the fixes that we need to encode or other things.
00:16:56.610 --> 00:17:02.110
And we kind of already seen that with the work that's going on now to move M code into the standard for Kroll use to level.
00:17:02.679 --> 00:17:03.700
So that's what we're doing.
00:17:03.840 --> 00:17:07.990
The use cases I'll read off really quickly, um, that that are active on.
00:17:07.990 --> 00:17:08.319
Now.
00:17:08.680 --> 00:17:10.839
We have one around real-world data trials.
00:17:11.079 --> 00:17:17.950
This is the most mature one we're now in phase two of that one, working with the Alliance for clinical trials in oncology are actually executing three trials.
00:17:17.951 --> 00:17:41.559
Now collecting data in, in Epic and in M code elements and sharing them collect, aggregating them in a central place to ensure that the data collected out of the HR are complete and of high quality as those that were collected in the case report forms that are traditionally the locus of information collected during trials related to that, we have another use case integrated trials matching for cancer patients and providers.
00:17:41.769 --> 00:17:47.500
This tries to help speed the enrollment of patients and trials and speed the ability for patients to find trials.
00:17:48.319 --> 00:17:51.029
Again, I can questions about any of these things, if there's interest.
00:17:51.569 --> 00:18:04.349
Um, but working our champion, we call it, there is the American cancer society, eye cancer registry reporting, the CDC and another private registry called the center for international blood and marrow transplant research are our champions there.
00:18:04.710 --> 00:18:12.599
We're trying to demonstrate the capability again, of collecting the data in one place on EHR, and then sending it to different registries for sometimes very different purposes.
00:18:12.990 --> 00:18:22.289
Probably should've said that from the beginning, that is kind of our common focus is being able to collect the data once in the EHR, any HR and share it in a standard way for different use cases.
00:18:23.130 --> 00:18:25.380
So those use cases are all what we call an execution.
00:18:25.381 --> 00:18:28.859
That means we're in, into phases, we're building stuff, we're testing stuff.
00:18:29.460 --> 00:18:33.599
And we have a couple of others that are in planning stages, a radiation therapy treatment.
00:18:33.630 --> 00:18:48.809
We've got the biggest, um, the biggest radiation therapy delivery system vendors like Barry Varian and Elekta and research working together to send a standardized report based on M code and other elements from their systems into the EHR in a structured way.
00:18:48.930 --> 00:18:52.710
Right now that's almost exclusively done with PDs.
00:18:53.670 --> 00:18:58.200
So getting this key structure data into the HR, right from these radiation oncology systems.
00:18:58.289 --> 00:19:00.390
So that's probably getting close to being an execution.
00:19:00.391 --> 00:19:13.559
Now we got all the right partners there, including the American society for radiation oncology, Astro, the American association of physicists in medicine who are kind of the brains behind a lot of the radiation work that's done AAPM and all the vendors.
00:19:13.599 --> 00:19:14.099
That's great.
00:19:14.640 --> 00:19:17.819
And then we're also working on a couple of others prior authorization.
00:19:17.820 --> 00:19:24.119
Can we leverage the work that the DaVinci HL seven fire accelerator has done, but focus on a very specific cancer use case.
00:19:24.750 --> 00:19:31.319
Carmel has been very active in that and also looking at clinical pathways or guidelines and how can we automate that using M code and other data?
00:19:31.859 --> 00:19:38.609
So these are the use cases are pretty well documented on our website and anyone who's interested in, I'm happy to share more on that
00:19:39.470 --> 00:19:41.390
Sounds was like the things that you guys are doing are pretty exciting.
00:19:41.391 --> 00:19:45.259
And I think that, you know, you said that comment earlier, why cancer?
00:19:45.710 --> 00:19:52.609
I don't know that I know anybody who hasn't been touched by or had somebody near them that's been affected by cancer.
00:19:52.611 --> 00:19:57.529
So I think it's, it's obviously a big issue in healthcare.
00:19:57.530 --> 00:20:06.920
And I also think that just like everything else in healthcare, you know, being able to get the data to organize the data in a, in a consumable computable way is half the battle.
00:20:06.921 --> 00:20:10.579
If you can do that, then you can start to do things that we've been trying to do in healthcare.
00:20:10.580 --> 00:20:15.380
It forever one of the big challenges that I think people struggle with with standards.
00:20:15.559 --> 00:20:22.400
And it sounds like you guys are doing a really good job to mitigate that is that, you know, healthcare evolves from the edges.
00:20:23.119 --> 00:20:33.769
Um, it's, it's kind of hard to create something, you know, authoritatively centrally and say, this is how everything's gonna work because healthcare is, is a very living dynamic, evolving space.
00:20:34.130 --> 00:20:42.619
And it sounds like with what you're doing with codex, you're involving people to kind of help evolve what you're doing based upon those things that are happening at the edges.
00:20:42.621 --> 00:20:50.529
So it sounds like it's really well, well situated to have a meaningful impact where we're going in addressing this issue in healthcare.
00:20:50.559 --> 00:20:54.609
So it's very cool stuff at the center of anything like this.
00:20:54.611 --> 00:21:06.430
So, you know, whenever you talk about fire, you talk about standards, you've kind of got this canonical, you know, standard and the patterns that you establish and then you have the semantic standards.
00:21:06.670 --> 00:21:22.509
And so what I like to do is kind of pivot from, you know, talking about the, some of the canonical things that are happening and the use case things, and talk about some of the terminological ontological things that you guys are doing, and you're putting together as semantic targets for M code.
00:21:23.079 --> 00:21:27.849
And, uh, I don't, I don't know if Carmela, if you'd like to talk a little bit about that.
00:21:29.369 --> 00:21:29.369
Hmm.
00:21:29.730 --> 00:21:31.380
Trying to think where to start there.
00:21:32.220 --> 00:21:35.160
Can I ask a leading question to, to maybe help with that?
00:21:35.670 --> 00:21:35.670
Sure.
00:21:36.210 --> 00:21:38.789
What is the, what is the scope of M code?
00:21:38.910 --> 00:21:44.609
So, you know, as Charlie mentioned, you know, there's sort of the defining data elements, so there's sort of some tactical level.
00:21:44.611 --> 00:21:46.079
These are all the things we care about.
00:21:46.619 --> 00:21:50.039
And then there's the, you know, trolls, your printers, the semantic level.
00:21:50.040 --> 00:21:56.039
So, you know, how do you effectively encode all that data so that it's interoperable.
00:21:57.180 --> 00:22:00.930
Um, what is the full scope of M codes, um, efforts there?
00:22:01.109 --> 00:22:03.420
Is it syntactic and semantic?
00:22:03.430 --> 00:22:13.440
Are you actually building out terminology and, you know, to address the mantic level, inter-operability leveraging existing content helps understand that a little better
00:22:14.220 --> 00:22:20.099
M code, uh, at the beginning was, you know, was trying to define their scope.
00:22:20.101 --> 00:22:21.390
So that's a really good question.
00:22:21.839 --> 00:22:27.329
What they ended up settling on was, um, solid tumor cancers.
00:22:27.330 --> 00:22:33.509
So they common data elements around cancers that are, that involve tumors.
00:22:34.349 --> 00:22:53.279
And so say some elements that might be common for say, blood cancers are not included in M code right now, but that might be considered say an extension if that were use case that, uh, codex, uh, prioritize, we would maybe work on what's required.
00:22:53.940 --> 00:23:01.049
What kind of data is required to collect for, uh, say leukemia versus solid tumor cancers.
00:23:02.789 --> 00:23:25.019
Um, so that's one of the scoping issues that they took on also, um, from the get-go they're trying to use existing code systems where they could, and as you might imagine, there's some very specific code systems out there that address some of the cancer elements like staging systems.
00:23:25.500 --> 00:23:32.579
So there's different staging systems that exist that are used in different situations.
00:23:33.119 --> 00:23:37.980
A lot of, uh, implementations in this country use the AJCC.
00:23:38.460 --> 00:23:52.970
So the American joint committee on cancer, TNM staging system, which breaks down staging into a characterization of the tumor, whether nodes are involved and whether, um, there's missteps.
00:23:53.759 --> 00:23:57.410
And can't say that word, whether the cancer has metastasized.
00:23:58.700 --> 00:24:19.279
So they did approach the terminology requirements by trying to find existing code systems out there that were being used by different maybe professional societies or registries or, um, cancer applications.
00:24:19.280 --> 00:24:24.890
Like sometimes there's a specialty EHR is that, are there oncology HRS?
00:24:25.670 --> 00:24:30.650
So sometimes there's, there was code systems used in those implementations.
00:24:31.420 --> 00:24:35.349
So what does, what do you do is, you know, as M code, when you find a gap,
00:24:35.740 --> 00:24:36.970
That's a very good question.
00:24:37.000 --> 00:24:42.730
And then Steve mentioned that we're one of our very active use cases is radiation therapy.
00:24:43.420 --> 00:25:04.299
And, uh, we're looking at snow med for, to record, uh, radiation procedure, which is pretty complex when you start breaking it down and that you might have a, a general procedure, but then it's really qualified for, by two other procedures, which are the modality and the technique.
00:25:04.930 --> 00:25:11.170
And what we found is that snowman, which is the recommended in U S Corps.
00:25:11.171 --> 00:25:11.380
Now.
00:25:11.381 --> 00:25:26.529
So M code is built with us core as a base, but snowman and CPT are the code systems for all an ICD 10 PCs that are recommended in U S Corp for procedures.
00:25:27.250 --> 00:25:44.740
So when we started looking at mud modality and technique, we realized that snowman did not have full coverage say for the, for the modality and technique procedures that the, uh, subject matter experts felt were really necessary to have.
00:25:45.400 --> 00:25:57.819
So there was some back and forth in the team and some folks were advocating for a well, let's define a separate code system, all new codes, so that we can just have a complete code system.
00:25:57.820 --> 00:25:59.470
And that's what we'll use.
00:26:00.250 --> 00:26:03.250
Others did not agree with that approach.
00:26:03.279 --> 00:26:10.630
And we had some back and forth and, um, really good communication among the team about what approach to take.
00:26:10.631 --> 00:26:27.880
And we did really did a three 60 and decided to, uh, use snowman and to submit the missing concepts to snomad, you know, you first, you have to submit them to the U S release center, then they're considered, and they may go into the international release.
00:26:29.859 --> 00:26:47.039
And, you know, some of the issues there that, um, some vendors aren't, aren't using snomad and, uh, they start bringing up licensing issues and, you know, what would it cost to use nomad if they operate in countries that are not snomad member countries?
00:26:47.880 --> 00:27:08.910
So this is all these kinds of discussions we had and you take it into consideration when you're trying to figure out is the M code specification or one of the codex specifications going to roll their own and create a code system, or are we going to try to work with the code system stewards and supplement what's already there?
00:27:09.440 --> 00:27:09.619
Yeah.
00:27:09.621 --> 00:27:32.660
Which, which kind of leads to, to, you know, I think questions that, or issues that a lot of people are facing now, you know, with the rapid, with the acceleration of, um, the ability to create things like fire IGS and so on, you know, comes along with it, the need to be able to make these decisions about terminology and vocabulary usage within those ideas.
00:27:34.009 --> 00:27:40.519
Um, you and I have talked about how standards are in some ways having, having its glory moment we've emerged.
00:27:40.940 --> 00:27:58.400
Um, as some of you who've been this, the HL seven meetings know that vocab, the work group is often, um, uh, often a corner someplace, um, uh, in the, in the sub-basement as, as the trolls that are necessary to, you know, kind of keep the, keep the building, uh, standing up right.
00:27:58.401 --> 00:28:17.839
But often, um, troublesome, um, and we've kind of emerged from that, that position to being the, uh, uh, as, as Julie James has, has, has referred to the HTA sometimes as Cinderella, you know, as, as a, as kind of cleaning up and keeping things going, um, uh, but not ever kind of getting to be in the forefront.
00:28:18.049 --> 00:28:18.349
Right.
00:28:19.099 --> 00:29:14.359
But would that, with that in mind, I mean, you know, a tremendous amount of progress has been made, um, via things like the unified terminology governance project, um, within atrial seven, to try to put some structure and process around, um, the, the, the maintenance of internal HL seven, um, vocabulary, um, you know, the, the gender harmony project that's looking at, you know, finally capturing the difference between sex and gender identity and sex for clinical use in a meaningful way where atrial seven has been able to bring together, you know, not only standards development organizations, but international participants, EHR vendors, um, the radiology folks, um, all together to talk about terminology and, and how it has a direct impact on the quality of the data and the outcomes for patients.
00:29:15.740 --> 00:29:28.700
Um, you know, we are seeing a emergence of tools that help within the HL seven community to do validation of things like code system identifiers, make sure people are referencing the versions correctly and so on.
00:29:29.779 --> 00:29:36.380
Um, and as you guys have talked about, you know, did the fire IGS there being an in fire in general being referenced in federal mandate.
00:29:37.400 --> 00:29:41.349
Um, but with that comes comes a different sense of urgency.
00:29:42.039 --> 00:30:07.630
A need for speed is as you've coined in other conversations, and that doesn't necessarily align with the traditional terminology offering and maintenance process that we've been used to, right, as you described for you identify a concept, if you're using snowman, you enter it into, if you're, if you remember country, you enter it into your national release center process, it has to get reviewed.
00:30:08.109 --> 00:30:12.190
You get an answer there's mitigation about, you know, the definition of things.
00:30:12.640 --> 00:30:19.720
Then it maybe ends up in your addition, and perhaps it ends up in the, in the core, all of that takes time.
00:30:20.829 --> 00:30:35.920
Um, and we don't always have it, you know, I, you know, in my role at the HDA, you know, worked with the Karen folks to ensure that their code systems were being identified in reference accurately, um, under a very tight timeline, right?
00:30:36.190 --> 00:30:41.170
Th that, that is being referenced in a CMS Rex.
00:30:41.500 --> 00:30:43.269
And so they had to get, we had to get it done.
00:30:43.660 --> 00:30:45.099
Um, and that isn't always easy.
00:30:45.910 --> 00:30:52.359
So, you know, I I'd be interested to hear from you or Andrew or Steve, you know, kind of, how do you find that sweet spot?
00:30:53.980 --> 00:31:04.329
Um, you know, what is the sweet spot between being able to efficiently do this, um, and making sure that the right terminology best practices are followed in terms of the creation of that content.
00:31:05.140 --> 00:31:06.460
Um, how do we get there from here?
00:31:07.470 --> 00:31:38.700
Some of it is to somehow change the mindset or enhance the mindset of folks who are in developing these ideas, uh, to start thinking about terminology and your terminology requirements at the beginning, rather than having it be an afterthought and, um, which it sometimes is as, as we've seen many times, uh, so somehow educate the community.
00:31:38.701 --> 00:32:00.839
And when I say the community, I guess I'm thinking of the, the HL seven community, the folks outside of HL seven, that are developing, um, implementation guides and have the material prepared to help them understand why it's important to, to think about your terminology artifacts at the beginning of your cycle.
00:32:01.380 --> 00:32:04.410
And what's available there to help you.
00:32:04.440 --> 00:32:07.289
You know, it's not a mountain that you have to climb by yourself.
00:32:08.250 --> 00:32:38.190
Um, there are these groups out there like HTA, which is the HL seven terminology authority that helps you discover or URLs code system identifiers for those code systems that are managed by an organization other than HL seven, like snowman or LOINC, or some of the new ones were coming across in the encode code space that we just have an HL seven hasn't identified yet.
00:32:38.839 --> 00:33:05.089
And, um, well, not identify that didn't sound quite right, but maybe they don't have a, um, a known identifier, an ex, uh, endorsed, or sometimes we use the word authoritative identifier provided by the code system owner, like AJCC for, um, the staging system, you know, up to this point.
00:33:06.109 --> 00:33:14.539
Um, we did not have a communication open with that organization to say, well, what would you like to use as your code system identifier?
00:33:14.540 --> 00:33:16.549
What would you like the community to use?
00:33:18.920 --> 00:33:25.369
So I think it's a kind of a culture change to try to, and that's going to be difficult.
00:33:26.210 --> 00:33:42.890
Um, especially when a lot of IGS fire ideas are developed by, uh, consulting companies who maybe aren't, uh, HL seven members, they might not be steeped in the culture of how things, how things are done.
00:33:43.460 --> 00:33:49.130
Our documentation is sometimes isn't as easy to use as we might like.
00:33:49.910 --> 00:34:04.759
It's getting better, just Boda created some great, uh, YouTube videos on how to use UTG, the unified terminology governance and their car gutted towards whether you're submitting or you're doing some other tasks.
00:34:05.539 --> 00:34:16.099
So it's, it's getting there, but I think it's, um, sometimes it feels a little disjoint how HL seven is approaching it because it's a big problem space.
00:34:16.219 --> 00:34:18.949
And it's, it's a lot to, it's a lot to cover,
00:34:20.019 --> 00:34:21.159
Uh, CML, a really good girl.
00:34:21.210 --> 00:34:21.820
You good thoughts too?
00:34:21.869 --> 00:34:22.019
Aye.
00:34:22.360 --> 00:34:22.360
Aye.
00:34:22.480 --> 00:34:22.679
Aye.
00:34:22.780 --> 00:34:23.190
Aye, aye.
00:34:23.199 --> 00:34:24.400
Something they add when you're done.
00:34:25.150 --> 00:34:30.340
If you don't mind, I'm not as steeped in HL seven or in health standards.
00:34:30.389 --> 00:34:41.889
As most of the rest of the people, Paul are, shouldn't have been surprised, but it is surprising even within oncology, certain kinds of disciplines have been working in their own silo for a long time.
00:34:42.070 --> 00:34:49.030
They didn't have to be interoperable because all you needed is for some care coordinator or oncologist to be able to read a report.
00:34:49.179 --> 00:34:55.630
And they kind of know what, how radiologists talk and how radio radiation, oncologists talk and how surgical oncologist talk.
00:34:55.630 --> 00:34:57.219
And they know that's all just talk.
00:34:57.221 --> 00:35:09.789
And so we're putting a new stress on the system that necessary for us all to talk the same language, you know, in the U S and they have six official languages, and they have interpreters that are working really hard to translate it.
00:35:09.809 --> 00:35:13.960
Even it changed, translate from one language to another, to another, and to make that work.
00:35:14.139 --> 00:35:17.889
And, and, uh, healthcare is a lot more complicated than language, I think in most cases.
00:35:18.699 --> 00:35:22.960
So even body state was one that came up last week of radiation oncology.
00:35:22.960 --> 00:35:26.079
They've talked about where are you putting instrument?
00:35:26.110 --> 00:35:33.550
And from outside of the body, what's the organ or part of the inside of the body, the mass inside the body that you're trying to target.
00:35:34.510 --> 00:35:38.699
Um, and you need to have a terminology for those and some kind of a code system.
00:35:38.701 --> 00:35:41.010
And they they've had things like this too.
00:35:41.010 --> 00:35:45.780
They've developed things like this on their own, but surgery, you also need to know where are you?
00:35:46.320 --> 00:35:47.159
Where's the incision?
00:35:47.161 --> 00:35:49.530
And where's the, you know, what are you trying to get at?
00:35:49.530 --> 00:35:56.400
And I guess every single subdiscipline of health has something about body site, part that's part of it's a vocabulary.
00:35:56.400 --> 00:36:02.340
So just how do you get people who have spoken their own language for a long time to agree?
00:36:02.340 --> 00:36:03.300
We need a common one.
00:36:03.300 --> 00:36:03.989
That's not easy.
00:36:04.380 --> 00:36:16.650
Um, and we'll probably end up having the compromise in some short term with mappings and things, but, um, the benefit of working with different disciplines within an accelerator, at least as you have those people, at least in the same community.
00:36:16.650 --> 00:36:19.949
And there's an opportunity to see if we can align.
00:36:20.519 --> 00:36:25.500
And we may find that this case is where we can, but we have to do we have to do our best.
00:36:26.429 --> 00:36:44.909
Well, that wraps up part one of our interview with Carmela Kadeer and Stephen brah from MITRE on M code and codex, and invite you all to listen into part two where we'll get more into some of the complexities and challenges around sharing data across silos and healthcare.
00:36:45.599 --> 00:36:52.710
I want to say once again, thank you very much for the folks that participated today and thanks to all of you for listening.
00:36:52.769 --> 00:36:57.000
I am Charlie Hart, and this has been the monster podcast.
00:37:08.480 --> 00:37:08.480
[inaudible].
