November 2022: Project ECHO

Dr. Brad Schlaggar (BS): Welcome to Your Child's Brain, a podcast series produced by Kennedy Krieger Institute with assistance from WYPR. I'm Dr. Brad Schlaggar, pediatric neurologist, the President and CEO of Kennedy Krieger Institute. This month's podcast discussion is about Project ECHO. ECHO here is an acronym that stands for Extension for Community Healthcare Outcomes. Project ECHO is a national training program that connects specialists with on-the-ground practitioners to bridge healthcare gaps, especially for under-resourced and underserved communities. I'm pleased to be joined today by my colleagues from Kennedy Krieger doctors Mary Leppert and Joyce Harrison. Dr. Leppert is a neurodevelopmental pediatrician in the Department of Neurology and Developmental Medicine at Kennedy Krieger Institute and is founder and co-director of the Teaching Excellence in Neurodevelopment Program at Kennedy Krieger as well as Project ECHO. She's also an Associate Professor of Pediatrics at the Johns Hopkins University School of Medicine. Dr. Harrison is a child and adolescent psychiatrist in the Psychiatric Mental Health Program at Kennedy Krieger Institute. She's also project director for Kennedy Krieger Institute's network for early childhood tele-education, which we call KKI-NECT and is Associate Professor of Psychiatry and Behavioral Sciences at the Johns Hopkins University School of Medicine. Welcome Mary and Joyce. Joyce, let's start with you. Project ECHO really has a very interesting origin. Can you tell us about Project ECHO and how it got started?

Dr. Joyce Harrison (JH): Thanks for having us today. Everybody who knows me knows I love to talk about ECHO because I think it's a great model and one that's near and dear to my heart. It actually started almost 20 years ago at the University of New Mexico with Dr. Sanjeev Arora, who really is sort of the cult leader of this movement, and he calls it a movement. But he conceived of this Project ECHO model because he is a hepatologist practicing in New Mexico, which geographically is huge. He realized that hepatitis C patients were dying and they easily could have gotten care if there was a way to move his knowledge to other primary care providers. For us, we spend about 40 minutes with our case discussion and then we provide a brief talk, a didactic lecture, if you will, for 15 minutes on a very clinically relevant or other topic for the providers. It becomes this longitudinal learning situation and it's not telemedicine, but it's really guided practice with the goal of really creating local experts. Having primary care providers learn what they need, basics of specialty care that they can do in the medical home, and it really promotes best practices, monitors outcomes, and creates networks of providers whom other providers can go to or send their patients to.

BS: It's a great example of a model that generalizes beyond what it was originally intended to do. It's focused on capacity-building and really gets at access. Especially as you point out in places where there are maybe only one specialist or perhaps no specialists in a broad geographic area to make sure that people who live there have access to specialty care and that's really relevant to what we think about it at places like Kennedy Krieger Institute focusing on pediatric developmental brain related issues. Mary, let's talk about the workforce shortage that we have of pediatric specialists broadly who focus on child development, like developmental pediatrics and child neurology and so on, and how has that shortage impacted children and families?

Dr. Mary Leppert (ML): Well, thanks Brad because Joyce got her favorite topic and you've moved on to mine. When we think about children with developmental problems, we also think about children with mental health, emotional and behavioral problems and the new terminology is MEDB disorders. It's mental, emotional, developmental and behavioral. Nearly one in four children in the United States have one of these disorders now. The specialists for caring for these children are in really short supply. When you just think about developmental pediatricians, whether they're DBP, developmental and behavioral pediatrics or neurodevelopmental pediatrics, there's only one of us for every 10,000 children in the United States with disability, it's just not a big enough workforce and ECHO really is the venue that I think is going to allow us to expand our workforce substantially. Because there are so few of us our waitlists, are long, and access is compromised not just by our waitlist, but by the volume of patients, the distance to the sub specialty clinics and insurance, et cetera. There's a lot of problems with accessing care, not just geographic ones. That access problem has a tremendous impact on our children and families. The impact is really substantial because what we know is symptoms of these mental health, emotional, developmental, and behavioral disorders, they start in very early childhood and we know that almost half of the children with developmental disabilities aren't diagnosed till after they get into school. We also know that that's very similar for children with mental health disorders. Especially in early childhood, there's a 2-4 year delay between when the symptoms start and when children are identified. We also know that only one in eight of those children with mental health disorders are receiving the services they need. The workforce is small and the problem is big.

BS: Those numbers that you referenced Mary are likely very much pre-pandemic and we know that this recent period of time the demand for mental health resources for children, especially in early childhood specialists in general has only increased. There's much to unpack here to talk through, but you made a comment a moment ago about the medical home. I think it would be helpful to describe what is the medical home and how does Project ECHO and this mechanism for training local providers relate to the medical home?

ML: The medical home is really what we think about with the pediatrician, where they're caring for children in community, and really also the community resources that are available to the pediatrician or the family medicine doctor, nurse practitioners, PAs, all of the medical providers that are caring for children with these disorders, especially in early childhood. We actually believe that through the mechanism of Project ECHO, we can help build expertise in the medical home. Because what we do know is we'll never be able to expand the specialty workforce to meet the demands of the mental health crisis, especially in early childhood.

BS: Just to underscore, there's long-standing shortage of specialists in these areas and there isn't going to be a mechanism that leads to more and more specialists. That's really the answer to why we have to capacity build to train primary care physicians, family practice physicians, general practitioners, pediatricians, nurse practitioners, physicians assistants, and so on as you laid out. Joyce, can you tell us about how it actually works? You alluded to some of the elements a moment ago, but how does Kennedy Krieger's ECHO project work?

JH: We started our KKI-NECT, so Kennedy Krieger Institute network for early childhood tele-education. We were federally funded to work with medical pediatric providers. We had nurse practitioners, we had pediatricians, we had a couple of family medicine practitioners. We started with funding to cover the state of Maryland, but then we were able to expand into West Virginia because of one of our pediatric partners had a friend who is a family practice doc in West Virginia invited us to go down and do a talk and then we got people across the state who wanted to join us. The beauty of the actual video conferencing is that we do it where we're available on the network. It doesn't cost us to have people join us and what the providers have to give is an hour of their time. We were funded for four years and when our federal funding was finished, we were able to procure some state funding and what the state wanted us to do is to work regionally, to start with a region that they identified in Maryland, a very high need and very low resources, which was the Lower Shore. They were very specific about which counties were included and what they wanted us to do is work not only with the medical providers, but to include the early childhood stakeholders, so the early childhood educators, mental health providers, social workers, special educators who were struggling with these very young children showing up in their settings with behavioral, mental health, emotional, and developmental needs that they just couldn't even begin to address. This was a real pivot for us, but it has been a really rich experience because what we are seeing is we are building these local networks where the providers who don't know each other are getting to know each other and understanding what they do, what the resources are, and connecting each other. We just completed in June, the Lower Shore ECHO, and the state is currently now supporting us to do one in Southern Maryland in three counties, and we have the same composition of a mix of medical providers and early childhood providers, and administrators and educators. We have this hour, we spent 40 minutes talking about the cases, and it's back-and-forth. We hear about a child who one of our partners is struggling with and puts out all the information to the group, we open it up to the group for questions, for more information, we have our own questions. Then together we generate recommendations and a plan. I think the biggest service that we do for our partners is, they're seeing children who really have a multitude of problems that need to be addressed, and we help guide them to prioritize what are the things they realistically can get done and plan, we're going to do this first, then this, so that they're not overwhelmed by this really laundry list of things that need to be addressed for this child. The children that we are talking about are very complicated, and again, they can be overwhelming to the partners that we're working with. We have seen their ability to begin to think about how to approach some of these really complex problems that they're seeing.

BS: In a little bit we'll talk more about the outcomes have been in terms of the abilities for the people who participated in the ECHO to take on common and more complicated patient scenarios. But earlier on you mentioned it was tele education, and I think in the current climate, people hear that and think of students doing virtual learning and tele-medicine. How is what you're describing different from the way people are currently thinking about tele education and tele-medicine?

JH: Project ECHO is entirely different than tele-medicine. Tele-medicine, which we've been doing a lot of in the last few years, is a patient encounter. It's a patient and their physician or nurse practitioner in a remote setting. But it is one patient at a time and it's subject really to the same barriers, the only barrier that it breaks is geography. But there's still waitlists, there's still insurance barriers to tele-medicine. It is one patient at a time where ECHO it is tele education. What we're doing in Project ECHO is trying to build the knowledge and the skill set of the physicians and early childhood providers that are on the call who are responsible for several hundred patients in their practices that have similar disorders. We use these cases that are completely deidentified as models for teaching how to think through cases, how to think through some common difficulties to present, especially in early childhood, and how to use the resources in their community to get that child what they need. It allows the providers to employ what they're learning across all the patients in their practices. I think of this plan as a difference between giving somebody a fish and teaching them how to fish, I think ECHO is teaching them how to fish.

BS: Mary, you need to build a curriculum and prioritize what items or topics are being addressed. Can you take us through a little bit of what those topics are and how you determine the prioritization for your curriculum.

ML: Sure, I'd be happy to. With every new cohort to our ECHO, we actually start after we introduce ourselves to people with the needs assessment. This needs assessment allows us to find out what the participants learning priorities are. What we've been finding over the last six years is that the learning priorities really are about behavioral health concerns and a lot of disruptive behavior. What we've done is we've built really a whole curriculum now that the content is geared towards all of the conditions, the mental health, the emotional, the developmental and behavioral disorders that present as disruptive behavior, especially in early childhood. We frequently get the calls about the three-year-old who is out-of-control, we had one this week, out-of-control child, parents are at the end of the rope. What we're trying to do is to let them work through all the things that could contribute to that disruptive behavior, that would include topics on autism, anxiety disorders, ADHD. We talk about developmental delay and intellectual disability and how that presents, disorders of communication and trauma, all of which can present with a child with out-of-control, temper tantrums at three, but there's a lot of reasons behind it. We built this curriculum. We used the needs assessment to help inform what the syllabus is for the cohort. Our goal from this is to provide awareness of all the potential causes of the symptoms and to identify or to give the tools that can identify the likely cause, to help make diagnoses and to help primary care doctors figure out how to manage these conditions in their community.

BS: Mary, what metrics do you use to measure and demonstrate the efficacy of the ECHO Program?

ML: We do use some objective measures, and we use some subjective measures. I wish we could quantify this objective ones better because I think it's better data. But objectively, what we learned is that our participants have shown statistically significant gains in their knowledge and their skills and most importantly, in their confidence and caring for children with these disorders. Our data is also showing us a tendency, not a significance, but a tendency towards our participants managing the majority of children with these mental health, emotional, and developmental disorders within their own practices and with the support of their community. Our hope is that primary care providers will be able to manage more of these children in their community. Then refer the children who are really complex or may need specialists directly to us. Because if this is effective, we will shorten our waitlist and improve access to care.

BS: Shorten the waitlist and improve access to care, those are first-order objectives, improving outcomes for those children as well. Often not discussed is that by having local providers able to take on these common and sometimes challenging situations, they're missing less work. The children are missing less school. There's all kinds, I think secondary and beyond, benefits of not having to travel long distances to see a specialist at some interval if it's possible to take care of those issues close to the medical home. I think that social impact effect is another benefit of this capacity-building locally. Joyce, you must hear success stories from the participants, the before and after experience. Can you tell us about a success story for some of the participants who are giving you feedback about the program?

JH: We have one pediatrician who has been with us through all of our six years. Who has said what she's been able to do in her practice and she in our minds really is completely competent. She can see the most complex children and figure them out. I also thinks she's someone to whom other pediatricians refer because she's a pediatrician that they know and trust, and she feels that she can take on all of these really challenging problems because we have her back is one of the things she has said to me. We feel like we have personal relationships with a lot of the providers and stakeholders that we work with. But I think that it's hard to measure by patients success stories, the way we are used to thinking about them. With us it's more providers success stories. In many of the practices we have worked with in pediatrics are large groups where there's always been someone in the practice who is identified as the one they send the behavior problems to. To see that person really blossom as a comfortable expert in addressing these disruptive behaviors and really getting to the bottom of these disruptive behaviors is great. Because again, we get to see the really complicated ones who really do need to see us and they're managing such a broader range. Seeing that they're comfortable because they know we have their back and they say this all the time, they feel much less isolated because they have the support and the network.

ML: I was going to add that too. I think that one of the most lovely comments that we get back and we hear this fairly frequently is that the pediatricians and participants tell us that they feel less alone in having to manage some of these conditions in the community. I think ECHO is all about building local expertise and I think we are doing that and we have evidence that we're doing it. But the unanticipated benefit that we're seeing is that there are these collaborations that are being established among the participants and with our hub team that has been really the joy of doing ECHO.

BS: What are the plans for the future? This is a question for both of you. What do you hope to accomplish next in the Project ECHO journey, if you will?

JH: We want to keep doing ECHOes forever. But if I think about what's my hope, what's my goal is, we put ourselves out of business because they don't need us. They really truly become experts, but I don't foresee that happening because I know, as you said at the very beginning of this podcast, that we're never going to be able to meet the mental health, emotional, behavioral, and developmental needs of this particular population. I'm an infant and preschool psychiatrist, there are a handful of us across the country. For this particular age group, many psychiatrists won't seek it. Putting ourselves out of business is [LAUGHTER] an unrealistic hope, but we're focused on early childhood, but we've seen the range of ECHO's that are done and we have so much expertise at Kennedy Krieger Institute that we want to see a bigger range of topics that can be addressed. Things like medically complex children, children with all sorts of needs that are really unique to our population. Personally, we have two more ECHO's in the works. One with providers for military families with young children, and another with Maryland State Department of Education that we're hoping to launch and get support for. Just expanding who are partners are, what topics we can do is really what we're very hopeful about.

ML: I think one more hope, I think from this project is that by arming primary care, maybe we'll get the identification of these disorders earlier, get them to the right places earlier and maybe change the trajectory for these children as they age. Because we know that the earlier we identify it and everybody understands what's going on, the better off that child is likely to be in the future.

BS: Well, therefore, how can medical providers or other clinicians learn about Project ECHO and gaining access to it?

JH: There is a large website at The University of New Mexico, just called Project ECHO, and it lists all of the different ECHO Projects across the world, not just the country. If you're interested in a specific topic, I would go to the University of New Mexico Project ECHO website. They can direct, they have a list of every topic.

BS: We can provide that link on the page for this podcast, and we can also include some other links that can be informative for anybody listening who thinks this is something that they want to learn more about, whether it's at the [inaudible 00:24:47] University of New Mexico, the origins of Project ECHO or right here in Maryland. Well, thank you both.

ML: Thank you, Brad.

[MUSIC] BS: Thank you so much to this month's guest for this fascinating discussion about expanding the medical knowledge in under-resourced and underserved communities. We hope all of you listening in have enjoyed the discussion as much as we have. We hope you'll share this podcast with your friends and consider rating it as well. We invite you to check out our entire podcast library at Wypr.org/YCB, KennedyKrieger.org/YCB, Wypr.org/Studios, or wherever you get your podcasts.