Using Data to Improve the Lives and Health of People Through Their Lifespan with Juan Espinoza, MD

00:00:00] Erin Spain, MS: Welcome to Science in Translation, a podcast from NUCATS, Northwestern University Clinical and Translational Sciences Institute. I'm your host, Erin Spain. NUCATS offers a wide range of data analytics and informatics resources to enhance biomedical research, address social determinants of health, and improve health care. Today, I'm excited to introduce you to a new member of the NUCATS Institute, who is a leader in using data to improve the lives and health of people through their lifespan. Dr. Juan Espinoza recently was named the Associate Director of the Center for Biomedical Informatics and Data Science, which spans NUCATS and the Institute for Augmented Intelligence and Medicine at Northwestern University. He brings with him more than a decade of expertise and oversight of research informatics and analytics as applied to basic, translational, clinical, and population health sciences. He is also the inaugural chief research informatics officer for Stanley Manne Children's Research Institute at the Ann and Robert H. Lurie Children's Hospital of Chicago. Welcome to the show.

[00:01:12] Juan Espinoza, MD: Thank you so much, Erin. It's a pleasure to be here.

[00:01:14] Erin Spain, MS: You are new to Chicago. Tell me how you landed here and the leadership roles at NUCATS, Northwestern University and the Stanley Manne Children's Research Institute at the Ann and Robert H. Lurie children's Hospital of Chicago. Tell me about all these roles that you've taken on here.

[00:01:28] Juan Espinoza, MD:  I came from Children's Hospital, Los Angeles and the University of Southern California. I came to Lurie and to Northwestern really, because I think the institution is at this really important inflection point in terms of data and informatics and technology and how do we use those tools to do data driven research and healthcare and operational and strategic decision making. And it felt like a really incredible opportunity to be able to be here at that time where we're making that change, that shift both, you know, culturally and technologically. And I wanted to be a part of that and really help build something meaningful going forward.

[00:02:03] Erin Spain, MS: We're going to talk today quite a bit about data, informatics as you were saying, and technology. You trained in pediatric medicine. How did you become interested in data and informatics and technology?

[00:02:15] Juan Espinoza, MD:  The path from general pediatrician to chief research informatics officer is not an obvious one. I should admit, I don't have an undergraduate degree in computer science or in engineering. My undergraduate degree is in French literature and linguistics, but I was always growing up, very much, technologically minded, you know, one of those kids that built linux boxes at home. And, both in sort of in my personal life and my hobbies, data and technology figured prominently. And then when I entered medical school my side hobby was that me and my best friend from college, we started a digital media company and we started building tools and solutions in the private sector, mostly, some entertainment industry, some in healthcare, some in technology sector and consumer. And doing things that were either mobile or audio or video or web, and sort of really developed these on the job skills. All in parallel while I'm doing my medical training. And so eventually I go through my residency training, in pediatrics. Because I love pediatrics. When I eventually became faculty, I wanted to figure out how to merge those two skill sets, I am a pediatrician. My goal is how do we help children achieve their best possible lives in terms of their physical, social, emotional health? And then I had this skill set that I developed sort of, on the side, so to speak, in terms of using data and technology. And so my goal was, well, how do we do those two things together? And so that's how I built my professional career, which led me down the path of working for our innovation group at the hospital, doing research on technology, on digital media, on wearable devices, eventually getting into medical devices, then into more formal data and data partnerships. I became the. Co-director of the Informatics group at the CTSA at my previous, institution. And then really started, exploring, at a larger scale how do we do, data in academia? How do we think about this at, this larger sort of ecosystem level, right? There are 300 academic medical centers in the country. There's 8,000 healthcare facilities. There are federal agencies. How do we think about all of the data that's available to us? How's it being collected? Can we improve the way it's being collected? How's it being stored? How's it being shared? How's it being analyzed? How do we do more with the data that we have? And also, how do we get better data? Always with the goal of how can this data help improve the lives and the health of the people that we have the privilege to care for?

[00:04:28] Erin Spain, MS: You have such an interesting background in technology, innovation, data, pediatrician. How do you describe yourself to people?

[00:04:36] Juan Espinoza, MD:  I think the shortest description I have for myself, for people is that I'm a plumber. My job is to make sure that things can get from point A to point B. And in the world of informatics, that might be the data source all the way in the hands of the researcher or the clinician who needs it. A lot of what I do is thinking about infrastructure and architecture. How do we get from point A to point B? The second part is, well, what are the best ways? What are our alternatives? How do we deal with something that's in the way? How do we get around it? How do we work with that thing that's in the way to improve our ability? And also how do we scale it? Right? We can make one-off solutions for this researcher or that project, or this company or that institution. But working on a mode of one-offs and exemptions doesn't scale. In academic medical centers at universities, like, we're trying to solve a problem and oftentimes we're doing the best we can with the tools that we've got in the time we have allotted. Which means that we don't always think about scalable solutions. And so going back to the knowledge of a plumber is that plumbers are often leveraging standard sized gauges and standardized tools and following codes and regulations to build things in a way that is repeatable. And I think in the data world that's really critical. One of the things that we are transitioning as an entire industry is from we solve this problem in this one way, this one time to here's a repeatable and scalable way that we can solve multiple problems every time using the same core set of tools. I think that's the nexus that we're at. And that's something that I'm, really excited about. So getting back to your question, how do I describe myself? So I think plumber is maybe a little bit of a glib answer. The other way that I sometimes think about myself if I want to be less glib about what my job is I describe myself often as a methodologist, meaning I have a set of tools, a set of skills, a set of knowledge that can be applied, broadly speaking, to many problems. But those skills, those tools, that knowledge works best in concert with somebody who's solving a specific problem. So whether the focus is diabetes or obesity or asthma or length of stay or bounce back rates. Whatever it is, working really closely with the subject matter experts and then bringing the methodological expertise to sort of say, "Great here are a number of ways that we might tackle this problem. How can we work together to figure out which one is the best one? And what is the meaningful insight that we can derive from it, and how can we iterate on it so that it keeps getting better and better and better?"

[00:06:55] Erin Spain, MS: There really are so many different ways that data has the power to really transform healthcare. Tell me a little bit about some of these ways, maybe first social determinants of health. Do you see an intersection here with informatics and all this data and improving social determinants of health?

[00:07:11]Juan Espinoza, MD: Absolutely. I think over the last, I would say probably five years, there's been a higher awareness of the role of social determinants of health and health outcomes. I mean, we've known this for a long time . An unconscionably long amount of time, given how little we did about it. But, we, we know how important they are. Over the last five years going back to some high profile, national events and in the news . The murder of George Floyd, the Black Lives Matter movements, and then the Covid Pandemic, really made it painfully obvious and difficult to ignore the role of social determinants in health outcomes in the United States. And one of the big problems is that you can't change what you don't measure, and you can't measure what you don't understand. So I think one of the big frontiers right now in informatics and in health equity work is understanding how do we even meaningfully capture this information? Are these things that you're going to ask patients? Is it, is it reported by proxy? Do you use contextual data from public databases, using, for example, geocoding techniques? What is the chain of custody of that data? When do you transform it? When do you change it? How does it change over time? Individuals are dynamic. Our concepts of selves change. Our situations in life change. And so , there are multiple dimensions of complexity and data surrounding social determinants of health. So we need to have better mechanisms to capture them. For lab values, we have LOINC codes. For diagnoses we have ICD 10 codes. For physical findings we have SNOMED terms. And those structured data elements really help power and drive a lot of the research and the insights that we can derive. And we don't really have that for social determinants of health. I think there's wonderful research being done by health services researchers, by social scientists, by policy about what are the social determinates of health? What are the various dimensions? What are the domains and subdomains? I think that work is excellent and constantly evolving, but the informatics field needs to catch up. We need to take those concepts, we did to codify them, so that we can create structured data that can be meaningfully used for research to drive the field forward. So we need to improve how we capture the data, how do we catalog the data, and then how do we actually derive insights to understand what is actually happening? And then finally, and perhaps obviously, but should always be said out loud, how do we use those insights to improve the lives of the people we care for?

[00:09:22] Erin Spain, MS: Part of NUCATS model of sustainable innovation is to seek out research barriers that can be overcome with informatics tools. So how do you think informatics tools can help break down research barriers?

[00:09:35] Juan Espinoza, MD:  That's a good question because there are barriers to achieving health equity in terms of how individuals access healthcare. There are barriers to equity and research in terms of how individuals participate in research, right? Who do we recruit to participate? How do we recruit them? Do they actually engage in the studies? How do we retain them? And, just like in healthcare, oftentimes the barriers are related to social determinants of health, to things like race and language and socioeconomic status and transportation and trust. There are all of these concepts, right? In the same way that they modify who gets access and who has what kind of outcomes in healthcare, they happen in research. So I think we can use informatics tools to address each of those, right? We can use them to do better recruitment. We can use them to meet people where they are. And sometimes the right solution is not the most technologically sophisticated one. We don't necessarily need to develop, incredibly complex machine learning algorithms to predict, you know, this person's going participate or that other, it's maybe we just need to help people with transportation vouchers or make sure that they have a mobile hotspot so they can participate in a study. So I think it's a mix of advanced techniques and technologies with the human side, right? Like, it is important that you participate not only like it makes a better science, but it makes us better humans and better society that we include everyone. And the way that we get there is by applying both sophisticated algorithms and really practical, human-centered solutions to ensure that folks can participate, whether that's to make sure they have access to the internet, they have access to technology, they have the literacy and education that they need so that they can meaningfully engage. I think we can do very impressive and advanced work in the field of informatics. But again, if we don't meet people where they are, then who is it for?

[00:11:15]Erin Spain, MS: And so you've just gotten started here at Lurie Children's and Northwestern and NUCATS. Tell me about some of your plans and who you're going to be working with to get some of this off of the ground here in Chicago.

[00:11:27] Juan Espinoza, MD:  I'm so excited to be here. There's a lot of work to do. There's a lot of work that's already being done that's really exciting, and I'm hoping to find really meaningful ways to contribute. How can I help elevate the work that is already being done and help, refine new directions for us to go in based on the work that I've done, and, how that informs my perspective on technology and data. So working closely with NUCATS is a big part of my goals. I think one of the things that attracted me about the position to become the Chief Research Informatics Officer at Lurie Children's is also the opportunity to be embedded within NUCATS and have a leadership role within NUCATS I think it's really important that we build, a better and more closer knit research community between the folks at Lurie and the folks at Northwestern. We all get so lost in the day-to-day of our lives, of our work, of our job, whether it's clinical, scientific, administrative, or both, that it can feel hard to make communities that are a little bit bigger than that and so one of the things that I'm excited about is how do we leverage the incredible expertise and resources and mentorship that are at NUCATS to really support all of our Northwestern faculty, all of our NUCATS participating members? And how do we leverage that as an opportunity to build more community, to build new partnerships? I love the fact that we are physically next door to each other. That's pretty great. And I think through, process and through community building and through partnership, we can take that physical proximity and turn it into collaborative and scientific proximity, and really do something special. Cause I think there are opportunities here that are fairly unique in our ability to do more research across the lifespan from babies born at Prentice to then cared for at Lurie, to then transitioned to a adult care at NM. That's pretty magical. And so working together to make that possible is something that I'm really excited about.

[00:13:10] Erin Spain, MS: You are going to continue your work as the director and principal investigator of the West Coast Consortium for Technology and Innovation in Pediatrics. How can NUCATS investigators get involved with, this work? I hear you're also going to create a new hub for this work here in Chicago.

[00:13:26] Juan Espinoza, MD:  One of the things that I'm really passionate about is pediatric medical device development. It's one of these big gaps that many people are not familiar with because when we think of medical products, there are drugs and devices and, you know, drugs are several orders of magnitude bigger, both in terms of the number of people working on them, the amount of money that they generate, the amount of funding that's available the number of companies in the space and devices sort of feel like this other space. And there are some really significant barriers, regulatory, scientific, ethical and financial to developing pediatric specific solutions and so many devices that are available that we use today in children are all used in what's called off-label. Meaning that, It is not how those devices were either designed or approved by the FDA. But because there are no alternatives, clinicians don't have a option. So they have to use these devices off label. They have to modify them, they have to do whatever they can in order to help treat children.

[00:14:16] Erin Spain, MS: Give me some examples of some of those devices.

[00:14:19]Juan Espinoza, MD:  The FDA, very broadly speaking, uses a risk-based classification system and breaks devices down into three classes. Class one devices are very low risk, they require very little testing. There are just some manufacturing standards that are required, some labeling standards that are required. And so, a stethoscope or a bandaid might be a Class one device. Class two devices have some risk, but again, relatively low risk. This might be a glucometer or diagnostic piece of lab equipment or an imaging tool that doesn't produce radiation. And then your most invasive and highest risk devices are typically class three devices. So these are usually things like implantables, you know, left ventricular assist devices, right? A lot of, things in the surgical and cardiothoracic world. Not just in those areas, but typically speaking. Here's a typical example. If you make vascular stents, you have to go through a very rigorous regulatory process that can take up to a decade and cost potentially hundreds of millions of dollars. And at the end of that process, if you make your product for adults, you'll have millions of customers. And if you make it for children, you'll have a couple thousand. And so you spent a hundred million dollars in 10 years to have, 5,000 customers. And so that's a, purely business and financial case that just doesn't make sense. And this is something that obviously, the industry is aware of the federal government is aware of. And so a number of regulatory mechanisms have been introduced over the years to both provide sort of incentives and requirements to help drive pediatric innovation in medical devices, but also to help support it. One of those mechanisms is the PDC, the Pediatric Device Consortia, which is a grant program run out of OOPD, which is one of the centers that's part of the FDA. And that is the mechanism that funds CTIP the consortium that I'm the PI of, and really our mission is to identify and support early stage pediatric device innovators and get them from concept to commercialization. And so we support both startups and university or hospital based researchers who are working on medical devices. So we have a number of mechanisms to do that. We do our own grant making, so we give out awards. But we also provide indirect support, meaning that we will pay for services on behalf of projects. And we also do a ton of consulting and networking and advising. We don't make a distinction between class one or class two, class three. The reality is all of pediatrics is underserved and underfunded. As long as there's a pediatric focus, then we are happy to be supportive. And so, , researchers that are at Northwestern are able to take advantage of, our center. They can apply for funding, they can apply for support, they can take advantage of our educational resources, our lecture series. It could be because somebody has an actual device idea and they need help figuring out how to take that idea to the next step. It could be because they're interested in the device development process in general, and they actually want to be a resource to companies. So a lot of folks may not have the engineering background to design a device, but they see the value and they have this incredible clinical knowledge or scientific knowledge that they want to contribute. So, one of the things that we sometimes do is matchmaking between startups that are looking for clinical advisors or research advisors and clinicians and scientists who are experts in their field who want to work with startups. So there's a number of ways to participate. If we do get renewed, starting September 1st, there'll be a brand new hub for the CTIP program based right here in Chicago at Lurie and Northwestern.

[00:17:34] Erin Spain, MS: Tell me about some of the success stories that have come out of this consortium.

[00:17:39]Juan Espinoza, MD: CTIP has existed now for 10 years, so through two funding cycles. In the last five years, I can tell you that we have evaluated over 500 companies and devices. 146 of those have gotten some kind of support from us. In the last five years, we've had 19 devices make it to market, and that's a mix of class one and class two devices, including a couple of De Novo devices that there was no predicate before. There was nothing comparable to it. So the FDA had to create a new category for that device. We're really proud that we're able to support a variety of innovations. Our portfolio of companies ,collectively over the last five years, raised nearly half a billion dollars in both dilutive and non-dilutive funding, including more than 30 million dollars in federal grants. A big part of our strategy is helping companies form research partnerships, look for grant opportunities, look for non-dilutive ways to extend their runway so they can achieve the next milestone to get them to a place where they can be either acquired or licensed or actually go to market and start generating revenue. It's been a really, really fun journey and I'm excited to be able to bring that here and build up our team, at Lurie and at Northwestern. The CTIP consortium today consists of 12 institutions all over the west coast. With the next evolution of the consortium we have 23 institutions who've agreed to participate, including eight of them here in the Midwest and in Chicago. That's something that's really exciting because those are ecosystems that are generating ideas that we didn't have access to before. Now we can work with them, we can support them, we can help bring those ideas ideally to market. And it's super exciting. So, fingers crossed that the FDA likes what we've done so far and thinks that we can keep doing it.

[00:19:17] Erin Spain, MS:NUCATS is a huge supporter of startups and helping researchers understand how they can take their research to the next level into commercialization in the startup world. Can you just talk a little bit about how your group is a good pairing with NUCATS and the resources that are already available?

[00:19:34] JJuan Espinoza, MD: Northwestern has a really, really robust tech transfer program. The idea of taking research and finding ways to commercialize it and partnering with industry or to spin out startups. There's lots of different ways to go to market. I think our program fills a very specific need. In general, at most institutions a lot of the commercialization expertise is either in drugs or in software, algorithms, digital health, and there's less expertise around devices. That's not an indictment of any one institution. That's how the sector is set up. And so, one of the things that we do is that we can bring that lens of, well, this is device specific innovation, and how can we provide a guidance and advice not only to the innovators, to the researchers, the clinicians, but also to the programs, the institutions, the departments, the tech transfer office, right? How do we create a strategy around this? The second one is pediatric specific. A gap at many institutions is how do we think about innovation that benefits children? And in that world, through that lens, we can support not just devices, right? Issues that affect medical device development for children some of them are medical device specific and some of them are pediatric specific, and the pediatric specific ones are generalizable to drugs and digital health and software and other products. I think that those are two complimentary sets of expertise that we're excited to contribute and to make available to both our institutional collaborators, but as well to like the individual researchers.

[00:20:55] Erin Spain, MS: And how do you see yourself interacting with NUCATS? What do you plan to bring to the members of NUCATS?

[00:21:01] Juan Espinoza, MD:  My official role is as the co-lead for the informatics section of NUCATS. And so working really closely with Justin Starren and, the entire team, I think I will bring a couple of things. One is specific subject matter expertise in things like geocoding, social determinants of health, a field that we broadly call equity informatics. The other piece that I'm hoping to bring is, is again, how do we think, how do we always make this bigger? How do we make the tent bigger and more inclusive? How do we make sure that the Lurie community is a part of this? How do we make sure that our Chicago community is a part of this? Are we thinking about, this incredibly, diverse and vibrant community that we have the privilege to care for and to do research alongside? Those are some of the things that I'm hoping to bring to this collaboration. Which isn't to say that it's not being done. NUCATS has done really incredible work and has built entire programs around equity and inclusion and diversity. And so my hope is to help add to those based on my experience and my expertise.

[00:21:58] Erin Spain, MS:As we mentioned, you're just getting started here, just getting your feet wet and starting all your new roles that you'll be playing. What do you hope to see in the next five years?

[00:22:08] Juan Espinoza, MD: Over the next five years, I would be so happy if we had very simple processes to join and share data across the NUCATS member institutions, whether that's Lurie or Northwestern or NM, Shirley Ryan. Make those processes fairly seamless and to really think about research across the lifespan. There's incredible things that we can do because we potentially have captured decades of data for the patients that we care for. And so can we build the right infrastructure and processes to enable our research community to ask those questions? If we don't have process, if we don't have data, if we don't have infrastructure, they might have those questions, but they can't ask them. So our responsibility is to do that. Northwestern has, for a long time been a powerhouse of informatics and Lurie Children has this incredible commitment to caring for underserved communities in Chicago. And so how do we really focus on equity informatics? In the same way that NUCATS is known as this hub for team science, there are these things that we are known for. Can this be a thing that we are known for, right? Can we have a commitment to the communities that we serve in Chicago and really focus our knowledge, our resources, our expertise in informatics to helping to drive equity, to achieve better health outcomes for all of the communities that we serve?

[00:23:22] Erin Spain, MS: Thank you so much Dr. Juan Espinoza for joining me on Science in Translation. We appreciate, your contributions that you're already making to the community, and we look forward to seeing what you're going to accomplish here at Northwestern.

[00:23:35] Juan Espinoza, MD:  Thank you so much, Erin. It's my pleasure to be here. Thanks for the opportunity.

[00:23:37] Erin Spain, MS: Subscribe to Science in Translation wherever you listen to your podcasts. To find out more about New Cats, check out our website, newcats. northwestern. edu.