For this afternoon's performance, the roles of Susan Azrin and Bob Heinsen will be performed by me. I'm Matt Rudolph, a long-time colleague of theirs in the NIMH Division of Services and Intervention Research and a member of the EpiNet team. Bob accidentally injured his leg last week and can't travel, and Susan accidentally retired. So Bob asked me if I would fill in for them, and I'm happy to do so. I have no conflicts of interest, and I thought, because one of the multiple sub-themes of this APA meeting is the 75th anniversary of the NIMH. And so I thought I'd start with a little historical overview to show kind of how we got where we are today. And I'm sure you're all familiar with this kind of a graph showing that the large numbers of people in mostly state hospitals in the mid-20th century and between the introduction of the phenothiazines in the early to mid-50s, followed by Medicare and Medicaid, which changed reimbursement patterns and discouraged people from staying in state hospitals. As you see, the decline in the institutionalized population was very rapid over a couple of decades. Now multiple presidential administrations over the years have taken the plight of serious mental illness very seriously. Really to a large extent, we could start here. The last major legislation that President Kennedy ever signed was on Halloween in 1963, the Community Mental Health Act. His little excerpt here, you can see here, construction of community mental health centers. That looks pretty good. And this administration is always good for great quotes. Today, under present conditions of scientific achievement, it will be possible to make the remote reaches of the mind accessible. The mentally ill need no longer be alien to our affections or beyond the help of our communities. Very impressive. And that was 60 years ago. By the time the Carter administration got involved, and of course, Rosalyn Carter was a great advocate on behalf of the expansion of mental health services, and she was the honorary chair of the presidential commission during her husband's administration. Now between those times, a number of community mental health centers were built. Many were not, and those that were, were understaffed, underfunded, and in some cases really were kind of confused as to what their role was. And suffice it to say that the support in the community that was supposed to come along with the mental health centers was really quite scanty. So policy gave a lot of expression to the idea that we had a problem, and there were a lot of people with serious mental illness who were not receiving appropriate services. Now the Surgeon General's report, that really wasn't a policy statement, but I thought that was important in that it established with the seal of the Surgeon General that mental health practice should follow evidence-based treatments. The George W. Bush administration's new Freedom Commission for Mental Health had a vision statement which caught my eye because it used this key word that we're going to say a lot of today, early. Their vision statement, and we envision a future where everyone with a mental illness will recover, a future when mental illnesses can be prevented or cured, a future when mental illnesses are detected early, one of our key themes today, and a future where everyone with a mental illness at any stage of life has access to effective treatment and support essentials for living, working, learning, and participating fully in the community. So that vision statement sounds pretty good even today. Now after all these policy statements over the decades, it seemed to me that there was this confluence of developments and events on the clinical side that really helped bring these aspirations to at least partial fruition, and I've noted some of them here. So first of all, of course, there was the actually relatively rapid replacement of the older neuroleptics with the atypical antipsychotics, and those seemed less noxious. That is, it's easier to envision people functioning all day rather than just being uptunded, and of course, hopefully, for many people, the newer atypicals are helpful against the negative symptoms in a way that the older phenothiazines were not. And then increasingly, psychosocial interventions, a key example being cognitive remediation, really took direct aim at some of the negative symptoms, which we know hold people back and interfere with their functioning even when their hallucinations and delusions are under control. The idea that the duration of untreated psychosis is an important metric really gained traction over the last couple of decades, and as we'll see, that really remains very important to keep in mind, that it speaks to the real value of diagnosing and treating early in the course of illness. And finally, and perhaps most importantly, it takes a village, and experience in Europe showed that a kind of all-hands-on-deck approach, a multidisciplinary team as well as family, treating new-onset psychotic illness with multiple modalities, often with patients being able to stay in their home, and preventing clinical deterioration or institutionalization. I have to thank the APAB. They said if I'm willing to serve as chair, they will upgrade my water. So I just... Now Ray's recovery after an initial schizophrenia episode has been one of the major projects of NIMH in the new millennium, launched in 2008. As you see, large-scale research initiative testing, coordinated specialty care treatments with the idea of identifying how to help people recover from a psychotic episode and reduce the likelihood of future episodes and long-term disability, in other words, intervene early and effectively, and really change the trajectory of illness. And just before I move on, I just should note, if Scrabble ever introduces numbers, remember A-R-A, the number one, S-E, is your secret weapon. So coordinated specialty care is one of our key themes of this part of your afternoon, because that's really the crux of the Ray's initiative. So as you see, coordinated specialty care is a recovery-oriented team approach to treating early psychosis that promotes easy access to care and shared decision-making among specialists, the person experiencing psychosis, and family members. So specifically, here are several components. There's individual group psychotherapy, family support and education programs, medication management, supported employment, and education services and case management. And again, it's probably fair to say that before Ray's came along, you could find examples of all of these in practice, in the community, and really what was novel was putting these all together as a package, essentially. Now, one of the best definitive studies of whether this made a difference, John Kane, who's been one of the leaders on the academic side in Ray's, led this study. This was done in 34 clinics in 21 states, with a couple of hundred patients divided between coordinated specialty care, which was termed NAVIGATE, and routine treatment. And basically, in a nutshell, over the course of two years, with measures of symptoms and quality of life, it was clear that the folks in the NAVIGATE coordinated specialty care fared better in both of those domains. And an interesting kind of kicker to the story is that the folks who did the best were those with the shortest duration of untreated psychosis when they came into the program. So again, I mean, I think that was a real wake-up kind of finding, that it really does make a difference that people, not just that they can't progress in their life if they're sick, but that really the hope for clinical recovery diminishes over time. So again, Ray's demonstrated that coordinated specialty care was more effective than typical care, and the program showed that it was possible to introduce coordinated specialty care in real-world settings, which is another important feature here, because we all know that sometimes treatments can look really good in a research setting, but might be unrealistic for use in the real world. And so really, a key part of Ray's was to show that it was possible to use coordinated specialty care in real-world clinics. So just before the pandemic, to use that as a reference point, Ray's was really having an impact in the clinical community, and the number of coordinated specialty care clinics really rose by something like a couple of dozen to a few hundred across the country. So NIMH in 2019 launched the Early Psychosis Intervention Network, or EPINET. This was done to establish regional scientific hubs connected to multiple coordinated specialty care programs, as well as a national data coordinating center, and eventually expanded to eight regional hubs in 17 states, with more than 100 clinics providing coordinated specialty care. And this, too, has a nice logo. And the Westat Logistics Company in Rockville, Maryland, has teamed up with NIMH to provide data support. And again, the EPINET program is seeking to go beyond just symptom treatment, or even quality of life, but, as you see, various aspects reducing suicide risk, preventing substance abuse and addiction, and most importantly, perhaps, sustaining long-term recovery. And so a key part of this is simply collecting a lot of data systematically over time. And many of the hubs have embedded research projects within them. The core assessment battery is at the heart of EPINET. This includes standardized measures and individual items to assess key domains of early psychosis, psychopathology, recovery, contextual factors, and treatment. And this is just one example, cognition. There are a number of domains, education, work, relationships, and so on. And again, the point is this is a large battery that's collected on entry into the CSE program and at intervals afterward. Now the basic idea, really, is to think in terms of a learning health care system. That is, the network is providing clinical treatment and learning what works and what does not work in the real world. So in sum, I think it's safe to say the results we've had so far show that coordinated specialty care can reduce the burden of first-episode psychosis and improve the lives of people with schizophrenia. NIMH regards coordinated specialty care as a research-to-practice victory that charts the journey of schizophrenia treatment from dire beginnings to action-oriented research to broad implementation in the U.S. health care system. And the rise inspired a revolution in treating schizophrenia, leading to the rapid growth of coordinated specialty care programs nationwide and increased access to high-quality care for thousands of Americans. And in this look ahead, and again, Bob Hindson and Susan Asrin did a lot of the heavy lifting here, and a couple of things worth keeping in mind going forward. Number one, that CAB core assessment battery is now available on the web for use in CSC programs, including those which are not affiliated with EpiNet. You can check that out for yourself. And there's another point here that they kind of dropped in, which I think is still early in terms of research but hearkens to the future, and that's the issue of clinical high risk. What about young people who are not, frankly, psychotic but look like they might be on the way there? And I think it's fair to say that that's probably one of the next challenges that we as a field will face. Okay, I'm going to stop here. Fortunately, I have a couple of expert colleagues with me, and we're going to ask to please save questions for the end. And they each will have their own unique perspective on coordinated specialty care and treatment of early psychosis. And so first, it's my pleasure to introduce to you Dr. Oluwoduny Oluwode, assistant professor in the Department of Community and Behavioral Health in the School of Medicine at Washington State University, where she has been located since 2016 when she showed up as a postdoc after receiving her PhD in health promotion and education from the University of Cincinnati. She's also completed graduate work in psychology and has done award-winning research on increasing racial health equity in addiction and mental health treatment, and has turned her expert views and research chops to the question of early psychosis. Oluwoduny, take it away. Thank you. This is my end slide, so you'll have a glimpse of what I'm going to present on. Okay, so hi, I'm excited to be here and talk about disparities and inequities in care. So as Matt had mentioned, a lot of my work is focused on illuminating disparities in coordinated specialty care and early psychosis treatment, as well as addressing those disparities and inequities in care. And usually I try to start off with really talking about sometimes we use disparities and inequities interchangeably, but they're fundamentally two different things. Inequities drive the disparities that we see, and oftentimes those inequities are structural-based inequities. And so we focus a lot more on the disparities end and addressing the disparities, and then often wonder why those disparities still exist, and it's because those inequities in care still exist. And so throughout my presentation I'm going to be talking about disparities and inequities that we see in coordinated specialty care, and part of that is starting at the race studies. Okay, I didn't put a disclosure slide, but I have none. But most of my work is funded by the National Institute of Mental Health. So disparities from race, from the race studies, because there were two of them, and then the rural implementation of coordinated specialty care. Matt had mentioned and had a picture up of a seminal study by John Kane and the crew that really focused on the implementation and the effectiveness of coordinated specialty care programs here in the United States, and a lot of that work built off work that had already been done in Europe and in Australia that really focused on building this collaborative front to support individuals in their early stage of psychosis. And the findings from that study were great fundings because that led to increased funding for states to implement those programs, but there are also several studies that highlighted disparities using data from these race epinet studies. So one of those first studies is by Arun and colleagues that really took a look at whether or not there were differences at baseline between white individuals and black individuals. And so really thinking about before even people start getting to coordinated specialty care and receiving services, were there differences in outcomes at intake? And there were. So prior to entering in, what Arun had found was that black individuals had poor functioning. They had more severe impairments compared to white individuals at intake. When you then look at studies that build upon that, you see that some of those disparities kind of washed away after receiving coordinated specialty care, and especially in this sense navigate, which is what the RAISE ETP study really focused on. The second example of disparities that were found was work that colleagues and I had did that really looked at whether or not there were racial disparities in the different services components. So really thinking about individual psychotherapy, what they call individual resilience training, differences in service utilization, and also outcomes. And so we didn't find any differences in the RAISE studies which were reported in this paper in terms of differences in outcomes over time, over that two-year period. But what we did find was that there were disparities in terms of family engagement in the family psychoeducation component. And part of why that is a really interesting finding in that black individuals were less likely to participate and utilize those services is that families, as most of us probably know, are very vital in the course of treatment, access, and treatment for young individuals, and especially for black individuals. In a subsequent paper we published using data from the RAISE study, we also found that for black individuals and black families particularly, that engagement, the family engagement with providers, actually leads to more improved quality of life as individuals move through care that we didn't find necessarily with white families. And so this really stemmed a lot of work in saying like, hey, CSE is good, we see these outcomes, we do see outcomes that are equitable to a certain extent across different racial and ethnic groups, but there are areas that we need to kind of focus on, and one of those areas is improving family engagement within care. And a lot of that stemmed off into additional studies that have really focused on improving family engagement in coordinated specialty care for black families. The third paper which came out, it was also done by individuals that were a part of the RAISE ETP studies, really looked at the effectiveness of RAISE, of Navigate Over Time, and within that study it actually found that there were differences in treatment outcomes when you took a look and when you accounted for individuals' socioeconomic status, and that high SES individuals actually did better and had better outcomes than low SES individuals. And one thing to take into mind for that is that individuals that comprised the groups that they had identified that were low SES were majority ethno-racially diverse, and so part of that then has to take into account, fine, we don't see differences or disparities as it pertains to race and ethnicity, but we do see disparities as it pertains to SES. And then when you also take into account what that low SES group is comprised of, we see that the majority of individuals within that group are overly represented by ethno-racial minorities. So then we move beyond RAISE, because if you really think about it, RAISE was, I don't know, more than a decade ago, and so then you're looking at the real-world implementation of what kind of came after the RAISE studies, and so positive things came after that. There are major improvements in the quality of care for individuals in the early stages of psychosis, which weren't there before, and so that was an added benefit. The next part of that was because of the findings from the RAISE studies, there was more money placed into the mental health block grant for states to start implementing CSEs within their state, and so a part of that 10% set-aside really launched this proliferation of coordinated specialty care throughout the U.S. that wasn't there before, and that 10% set-aside still exists where states are now able to implement more and more coordinated specialty care programs, and there's been several studies that when you take it from research to practice, even in the implementation of coordinated specialty care that isn't surrounded by a research study, these programs actually make a significant impact for individuals who receive services from CSE. One of those programs is a program in Washington State. Our program is called New Journeys. Our model is a, I would say, a modified model of Navigate. Our programs were initially trained by Navigate trainers, and over time that model has really modified to really meet the needs of individuals that are receiving services from our program. Our model is also supported by individuals at Washington State University. In the implementation of the assessment battery that we use, the evaluation of that program, really training providers on how to use measures and integrate them into their care and really do treatment or data-informed care. They're supported by a team at the University of Washington that trains them on the different components of Navigate and provide different implementation supports along the way, and then we have a joint collaboration with our health care authority. So our health care authority contracts to us, they contract to UW, and then they also contract to all of the CSE programs that are implemented throughout the state. So over time, our programs have increased over the years. Right now we have 14 programs implemented throughout Washington State. We have four additional programs that are being launched this year, and one of those programs is the first program to be implemented in a tribal community where we have really built a collaboration and a partnership with tribal communities in Washington State to modify our New Journeys model and how that would kind of be integrated within the services and the network that's already provided within a tribal community. So Matt had also mentioned EpiNet, and so we moved from RAISE studies and we move over into EpiNet, and I know that a lot of programs have started to use the core assessment battery, the CAB. We use a CAB where most of it aligns with EpiNet in terms of their measures, but part of what we then consider is what is the actual most feasible way that providers will actually use this. Are there measures that align with things that the agency already collects? So one difference is in the core assessment battery they don't use the PHQ-9, they don't use the GAD-7. Within our core assessment battery we use the PHQ-9 and the GAD-7 just because it reduces some of that burden among our providers where they're not doing additional measures above and beyond things that they already use, and so we really try to find an alignment there. So we have 10 core measures and then we have six optional measures, and that provides some flexibility for programs to use additional things to meet the needs of their individuals. So some of our sites use a discrimination measure at intake to really understand their experiences, and most of those sites are also some of the sites that are most diverse or in rural places. If you're familiar with Washington, we have a lot of migrant workers and so one of our programs is based in Yakima, which is very much rural serving and a large population of Hispanic individuals. The other part of why we use those measures, it's not just for data-informed care, but it's also to make these improvements throughout our system. Where can we make modifications? Where can we shave off measures that clients and providers do not find useful? So that they're not just collecting data to be collecting data, but they're collecting data that's actually useful to them, and so we spend a lot of time trying to create buy-in from providers to collect this information. The other difference from our core assessment battery than EpiNet's or the CAB core assessment battery is the CAB, part of the directions of that is to collect that information at intake and every six months. We actually collect our measures, for the most part, monthly. So that, one, because there's a lot of disengagement, and so we don't want to miss people that may disengage in between services, but also because it provides them with a better picture where clients are now buying on into the measures because they're able to see differences in their outcomes over time. And then we do an evaluation that we send back to the state so they could continue funding all of our programs. So even in light of RAISE and EpiNet, disparities and inequities in care still exist, and so I presented some of the disparities that have been published using RAISE data. I'm now going to move into some of the work that I and my colleagues have been doing that have really spoken or talked about disparities along the pathway to and through care. So one part of that is we published a study, it was a study funded by the National Institute of Mental Health through a Career Development Award, where we really were focusing, a big interest of mine is family engagement, and so we asked individuals what were their first, second, and third points of contact before they even got to coordinated specialty care from the perceptions of family members, knowing that family members play a pivotal role into accessing care. The majority of referrals that come into the program are usually done so by family members, and so what we found here was A, there was a lot of variety in where individuals were going to before coordinated specialty care, but ethno-racial minorities were more likely to get in contact with informal resources more so than formal resources, and I've tried to color code it here by red and blue, in that the red ones are informal resources and the blue ones are formal resources. What I haven't put up here is what this kind of looks like in comparison to first, second, and third contacts for Hispanic individuals, or first, second, and third contact for white individuals, but looking at this visually for black families that indicated this, it was more complex and there were more individuals that they were reliant upon, and this is really to show that for pathways to care, for the most part, people aren't thinking there's something wrong, there's something, there's some changes going on in my loved one, I need to go to a mental health provider. Usually it's not the case. That is usually probably the last contact if by accident do they get connected to coordinated specialty care. A lot of the times they're going to trusted resources in order to seek out information before they even get referred, but for some individuals that disengagement happens a lot earlier on, which is the red dashes, the vertical dashes here, people disengage even along the pathways to care before they even get to coordinated specialty care. A second part of my work is really focused on geographical disparities, and so this is really thinking about inequities. Part of this work led to a larger study that we have through NIMH that's really focused on are disparities purely at the individual or in a personal level, or are states essentially creating disparities in care because of the inequity in where programs are placed throughout the state? So in Washington State, at this point in time, we had 10 CSC sites, and we decided to look at where those programs were placed, in what types of neighborhoods were those programs placed, and was it creating an accessibility issue for individuals from certain communities? And we found that low SES individuals and individuals residing in rural places had low accessibility or geographical accessibility to programs, and that's because most of our programs were implemented and placed in high-resourced areas. And so the larger study coming from this is really actually trying to take a snapshot of coordinated specialty care or 350 plus programs throughout the U.S. and seeing where these programs are actually placed, what resources, what considerations do states make when it is that they're deciding where programs are placed, and are they creating disparities for different communities and where individuals reside? The next study, well this study, took a step back and was really focused more on social determinants of health rather than just simply looking at racial and ethnic disparities and geographical disparities. What this looked at was, are there differences in baseline or intake symptoms based on different types of communities that people may reside in? And so we did some, I didn't, the statistician did, did some latent class analyses, and what we found were three different types of neighborhoods for individuals who are receiving services from our coordinated specialty care programs. In that one group, that was one profile that was found was rural. The next one was low-risk urban neighborhoods, and then the last one was high-risk urban neighborhoods. And what we found was that high-risk urban neighborhoods had poorer outcomes at intake. So individuals that were residing in these high-risk poor communities had worse outcomes than individuals that were considered low-risk, which is high SES communities, more access to different resources, same type of environmental exposure than low-risk and rural communities. And this really builds off some other studies that have been published, even using studies from New York, or on track New York, that really took a look at social determinants of health, even on the pathways to care, in that it's not just race and ethnicity that drives these things, it's also where individuals are residing and what it is that they are exposed to that may be driving different symptoms that we see at baseline and at intake, and as people matriculate, and what it is that they have access to. So then we go back to family, family engagement. In our CSC programs in Washington State, we took a look at family engagement, and lo and behold, family engagement is low. Around, I think, less than 50 percent of individuals' family members are actually engaged in coordinated specialty care. That is on par with race studies that were conducted years ago, and we continuously see this through multiple different CSC networks, where we see low rates of family engagement throughout coordinated specialty care. One thing we actually took a look at was clinician practices. Our clinicians scheduling appointments, they, our family members, attend in those appointments, how much contact clinicians have with family members, and we looked at that by race and ethnicity, and what we found was clinicians actually scheduled black families less often than white families for family psychoeducation, but the caveat to that is that they also had more contact with family members over the phone than white family members. And so this was a really interesting thing in that it's not just prescribing, because it could very well be that providers were actually making more contact over the phone, so there was no need to schedule those appointments, those in-person appointments, but it could also be that black family members preferred doing things over the phone than having to get into the car, shuffle off, and then attend these appointments. And so it was a combination of these things, I'm going to talk about a study at the end, a combination of things that I have presented, which is why we then created a family peer navigator model for black families. And so in the spirit of EpiNet and data, we also took a look at who was completing measures, and we looked at that by race and ethnicity, and what we found was, for the most part, service users, clients, were less likely to complete measures on their own. So meaning, if we sent or text a message to individuals by phone, they were less likely to complete it in their home watching TV. And so a lot of the times they needed a clinician or a provider to help complete those measures. But we also found differences in survey completion rates by race and ethnicity, and that black individuals and American Indian Alaska Native individuals and clients within our program were just less likely to complete those measures on their own. And so that's now starting to kind of really take a look where we're now looking to explore what measures are actually meaningful for individuals to complete. Can there be variation in some of those measures that are completed? That doesn't do well for an evaluation or when you're measuring the impact, but it does better. And so some of that is juggling the needs of doing an evaluation and research versus actual clinical practice and what's actually the most beneficial for clients and families completing those measures to inform their treatment. So I'm going to take the last couple of slides to talk about a study that's called Family Peer Navigator. It's focused on increasing access and family engagement, especially at that initial appointment for black families. And part of that is from a lot of the disparities and inequities that I kind of demonstrated in my earlier slides. So I'm going to give a little bit more of a summary that's really more pertinent and specific to to the black community. So ethno-racial minorities are more likely to have contact with informal sources than formal sources, which I had showed you on a previous slide prior to connecting to coordinated specialty care. And that pathway, as I had mentioned, is just filled with a lot of complexity in where it is that individuals go, and even if they are informal resources. We know that through administrative data that has been published using Kaiser Permanente data, black services are less likely to utilize mental health services in the year prior to onset compared to white individuals. We also know that a lot of the work that Dr. Angland and Hans Oh have been doing really focuses on the experiences of discrimination and racism that contribute to mistrust, delays in treatment seeking, oftentimes disengagement and the lack of treatment. We also know that racism and discrimination has an influence into psychosis risk. And so that's another part that we wanted to kind of focus on. And that black family members slash support persons are less likely to engage in family psychoeducation. Some of the studies that we have looked at is if you can hook individuals within the first three months family members, they are more likely to stay involved in family psychoeducation. And so part of that moves beyond just looking at coordinated specialty care, but really addressing the pathways to care and the negative experiences that individuals may have so that they're more engaged in coordinated specialty care, which we know is very beneficial for individuals. So our model uses a socially ecological model where we're addressing multiple different things. So at the societal level, we're thinking about discrimination and stigma, really training black family peers and the use of different things where there's a lot of synergy because those experiences are often shared. We are doing a lot, a lot of community outreach, which is presentations at different organizations, community centers about early psychosis so that individuals know that they can link to us. And then we're using family peers because as we know, there's a lot of literature in the connectedness that comes about when you're connecting individuals with peers that have also had a loved one that has experienced psychosis or moved or matriculated through coordinated specialty care. And then part of that is we also provide brief psychoeducation, which is introducing individuals to what early psychosis is, introducing individuals to what coordinated specialty care is, but also making people feel OK if that is not the pathway it is that they're going down. So our goal is not just to connect individuals to coordinated specialty care early so that we're reducing that duration of untreated psychosis, but also getting individuals access to other things that may be more pertinent to them. And a lot of the times, that is actually not mental health care. So these are the two goals which I had kind of mentioned. We want our family peer navigators to be the first point of contact for black families so that they can get connected. And so our family peer navigators are connected with all of our program directors in our coordinated specialty care programs. Or we want to get them connected to the most appropriate provider for them. But the reality of it is that most people aren't going to go to our family peer navigators first. And that is why there's a lot of outreach that is needed. Most likely, they're going to these first points of contact, which are a lot of informal resources, and informal resources as well, so they know who exactly we are so they can get connected to our family peer navigators. And so we know that that's going to be the first point of contact, which means we're engaging all of these different areas and resources for individuals, and then connecting them to our family peer navigators. And all of our work is done remotely. So unless an individual specifically asks to meet in person, all of our points of contact, which are weekly and usually done over the phone, are done remotely, and usually at a time that is most convenient for family members. Because we know that there's a lot of barriers for why individuals may not access services, why they may not be engaged. And so we do things that are at 6 PM, when people are more available because they're making dinner at home. We do appointments over the weekend. And so we try to be as flexible as possible in order to have family members remain engaged. So part of that outreach includes we have a community advisory board, which is comprised of different organizations that are really focused on diversity and equity. So we partner with local NAACP's that usually often have a health committee. We partner with the Urban League. And so in Seattle, the Seattle Urban League has a whole mental health component. And they have their own community navigators. And they're very much focused on community mental health. They're also then trained to enroll individuals in Medicaid. And so that serves as a good resource for a lot of our families that we connect with. We have different nonprofit organizations. So we partner with an organization that was developed in honor of her loved one, her son, who died by suicide. And she's very much wholeheartedly invested into providing services and providing care and resources to other black families in the community. And through these different connections, we partner with individuals on an array of different events throughout the community, tabling. And it's very time intensive. But they're all manned and supported by our family peer navigators who connect with individuals. And oftentimes, we don't lead with, do you want to talk to us about early psychosis? Most of the times, that's not the case. And I'm going to show you in a couple of slides what the majority of people's goals are when they do connect with our family peer navigators. So in about a year time, in about a year, because the study is still going on, we've had 50 referrals to our family peer navigators. And it's only been launched on the West Side. So if you're familiar with Washington State, that's really thinking about King County, Seattle, Pierce County, Tacoma area. We've had 50 referrals in. We spent the first six months doing a lot of community outreach. And we weren't even receiving any referrals. And then all of a sudden, it was, I saw your flyer on a telephone pole. And I have a daughter that has been experiencing XYZ. And I'm hoping that you could engage with me. I don't know if anybody remembers in college. I do. When people had parties in college, they used to plaster cards, everyone's card with little flyers about different parties that were going on. We do those same things, where we're plastering cards with different leaflets about different types of information. Why? Because we know that most individuals will talk to somebody that is connected to them. And it's that somebody that we then need to capture in order to inform them a little bit about what early psychosis is and where they can get resources at. So a lot of our referrals have been self-referrals. Most of them have come from community organizations that we have partnered with. We've screened 30 individuals for eligibility. So we do lose quite a bit of people that get referred. And then we are unable to contact. And then we use the PQB as a part of that screening method. We see the mean age. Most of those referrals, they're either seeking for their loved one or they're self-referrals. And then in the bottom left-hand corner, you'll see what participants' goals are. And I also have a quote from somebody within our study that was taken at baseline because it's a mixed method study. In that, while individuals are concerned about their loved one and about a mental health aspect, where they may not know if it's psychosis specifically, a lot of them are looking for different things or different resources within the community that they can connect with. And our core of it and our core of our family peer navigators is that if we can help get individuals connected to these different needs that they have, that they're more likely then to get connected to a coordinator of specialty care because some of these other needs have been met. And a lot of those needs happen to do with social support, housing, getting access for their loved one for different types of resources, enrolling in public insurance and things like that. And so we have these strong connections with individuals that can supply those resources so people are not going up and down, up and down, and then disengaging because it's so hard to find information most of the time. And so that's what our family peer navigators hope to seek. And then we do make those referrals where people aren't also getting lost in the larger agency for our coordinated specialty care programs because we have that direct link with those programs. And I think I'm going to move it on and introduce Ken next. I think that from this study, I've learned a lot. One, not everybody that may screen high risk for psychosis is looking for coordinated specialty care. A lot of individuals are looking for other resources that happen to be related to their overall wellbeing. And I think sometimes we focus a lot more on the symptoms and how there may be disparities within there. And sometimes we don't focus on what constitutes that wellbeing. And a lot of the time is independent housing. It's skills that they can use to manage and communicate with their loved one or communicate with others. And it's developing a supportive network. And so that's some of the findings that we've been finding out, even though we are connecting people to coordinated specialty care and providing that support. So it's a warm handover within our services. So I'm going to end it there. I'm a little over time, but I'm going to introduce Ken. Ken is the Chief Medical Officer for the National Alliance of Mental Health. And he also holds a faculty position at Harvard Medical School. And he's going to be bringing his perspectives as a psychiatrist in his presentation. So please welcome Ken. All right, thank you, Juni, and thank you, Matt. My name is Ken Duckworth. I'm the Chief Medical Officer of NAMI. I'm a psychiatrist. Let me learn a little bit about this audience. How many of you have worked in a coordinated specialty care program? How many of you long to? How many of you are involved in administration of mental health services? And how many of you work for a private payer? I'm going to see you after class because the private sector is not lifting their weight. I've been halftime for NAMI for 20 years. I live in Boston. I volunteered at the PrEP program, Prevention, Recovery of Early Psychosis, for five years. And it was a great joy. It was closed due to COVID. And I live in Boston, and my dream job is in Washington, DC. For you young psychiatrists, do not recommend this approach of living in a different city than your dream job. But, you know, I'm really attracted to terrible drivers and rude sports fans. It's just, it's home. So I'm not leaving. So I've done this job. The policy aspect of NAMI has been very integral to what we're trying to do here. But I also wanted to participate in coordinated specialty care as a practitioner. So a couple thoughts. I ran the Massachusetts Mental Health Center when I had brown hair. And young people would come in with early psychosis, and I knew we were going to lose them. I couldn't conceptualize this work that Matt, Bob Heinzen, and other people at NIMH had put together. But I knew that what we had wasn't working for people. We had industrial tables and chairs in the waiting room. We had people with gray hair seeking their next appointment. And a 20-year-old person with psychosis would enter the room and say, this isn't a pathway that I want. And they would never come back. And I knew we were failing people because we were, of course, treating stage one illness as we would treat stage four illness, first gear and sixth gear. Inpatient care, long-term, if you can imagine such a thing now, it existed then in the 90s when I was the medical director of the Mass Mental Health Center. But we didn't have any preventive upstream activity. It was as if we were treating stage one cancer and stage four cancer the same way. So I really want to shout out the NIMH for their, I think, brilliant work and learning from people in Australia who came up with this first. NAMI was our research award winner in 2012 as part of my effort to bring NAMI into a public health framework. Then we gave Lisa Dixon the award. She's a treasured person for many reasons, but also runs on track in New York. And then we gave Mathuri Kesavan the award. Again, I was kind of trying to move the organization, which I would describe as resistant to this idea early. Version 1.0 of NAMI was family members who'd been blamed psychiatrists for their children's schizophrenia, a dark piece of our past. They were interested in a biological solution. They became NIMH's best friend. That's version 1.0 of NAMI. Version 2.0, we become the largest peer group of people with lived experience in the world, and we're also the largest group of families. And version 3.0, we've taken on early intervention, diversity, equity, trauma is integrated into our thinking. So this is a great time, and I've been able to watch the entire endeavor. NAMI helped to advocate to create the money in the state block grant. That was critical, because we were very concerned that when you set these programs up, they were gonna be vulnerable to cuts. NAMI also advocated for payment structure. So there's now codes, which you could charge and pay for in the private sector if you were so inclined. What we don't have in terms of the payment structure is a certification body. So that my apocryphal business, I'm from Boston, is Dunkin' Donuts. They don't wanna pay for anything, they don't know exactly what they're paying for. So if you have a code for early psychosis, that's great, but you also have to have a program that meets specs, like a partial hospital. How many hours of nursing? How many recovery services? How many rehab services? And so I wanna tell you that I think the future's bright in this regard, that there were zero programs when I was running a mental health center, and that I got to enjoy one. The one I worked at was in a separate location where only young people were there. What I observed is there was more insight in the people who arrived. Their experience was this is something new and problematic. Their families showed up a lot. I had a lacrosse family. We were the only program for southeastern Massachusetts, and I had a lacrosse family say, I said the program starts at 9 a.m., and you guys live an hour and a half away. How do you wanna problem solve that? And they said, we're a lacrosse family. We'll be here at 9 a.m. Right, like people are really interesting how they approached it. Many of the people did not have schizophrenia. I was impressed by this. I'm interviewing people, and they had psychosis from Adderall, marijuana, sleep deprivation, and a breakup. Like that was a thing. People had a psychotic response, or we were trying to figure out if it was trauma-induced dissociation that looked like psychosis. So what I was very impressed by is how engaged people were, how people were interested in self-management, that people wanted to go to school, and they wanted to go to work. They wanted to be in groups with other young people. They didn't mind a guy with gray hair as their doctor. That was fine, but they didn't want their peers to be people in their 50s. I was just very impressed by this. So what NAMI's doing now is related to this in that we helped jumpstart with my colleague Terry Brister in the black corner there, the AMP Schizophrenia Project. We're building on this early psychosis model. This is a $100 million public-private endeavor that the Foundation for the NIMH is running, and NIMH and NAMI are quite tied. It's pretty awesome, and we're looking for the conversion questions. Who converts to a psychotic illness? Because this is kind of a critical thing because I was impressed that some people actually just had an Adderall psychosis, and some people just had profound sleep deprivation from college. It was a very interesting experience for me. So I don't want to take too much time because I want to make sure we have time for questions, but I really want to emphasize, this is a breakthrough model. This is the best public health of mental health model ever created to my eye. You could make an argument that restraint reduction is also a public health model inside of hospitals, prevention, having the patient understand what's going on with them, having the staff know whether calling the mother is activating them or calming them. I would give that the silver medal for a public health approach to treatment. This is the ability to treat people differently at stage one of a psychosis. The other big challenge that we face, Matt, and I don't know how much you've thought to this, is the day the person ends our program, and due to scarce resources, they can't hang out in our program, which they come to love the program. Then they have to go to the Massachusetts Mental Health Center, the same place that didn't work for people when I was in the 90s. We need to think about a more transitional phenomena. At NAMI, people have become very supportive of this model, but are concerned that it doesn't necessarily contact people with bipolar disorder, and if you're over 30, they also feel that they have missed a developmental boat, and they don't like that very much. My son is still young. He's still early in the course of this. I don't want him on SSI or SSDI. I want him to have a job and an identity. I would say it's been a very interesting set of challenges, but you should know the National Alliance on Mental Illness, we're on this. We're not going to stop. Having a code for this is very important, but the public sector has essentially been underwriting the private sector, in that there's no holistic day code for coordinated specialty care that Dunkin' Donuts would pay for. That also implies a certification gap. That is an issue. NASHPD is working on that. The National Association of State Mental Health Program Directors, bad acronym, good people. Those are the commissioners of mental health, and they're trying to work the problem to figure out a certification, because without that, Dunkin' Donuts isn't going to pay for this. So I want to say this was the coolest thing I ever did as a clinician, was volunteer at an early psychosis program. I want to thank Matt and the people at NIMH for a brilliant learning from our friends in Australia. I want to thank Dooney for identifying so many of the problems that even come with a better idea, and how to work that problem. I think the informal network thing was very consistent with my experience, and different people came from different places. Inpatient units, pastors, friends, people who didn't need our program came to our program. I'm gonna say in a modern world of social media, flyers showed up really well. I had the same experience. I found a flyer for early psychosis. Like, a flyer? Like, you're kidding. Yeah, and then I decided to come here. So I'm pretty hopeful. You know, NAMI's the largest organization in America of people with lived experience, and the people who love them. We have made a transition from believing in state hospitals, we like state hospitals. I want to emphasize that. The closure of the sixth gear was probably a mistake across the board, but we're really, really interested also in the delta between first gear and sixth gear, including this coordinated specialty care model, which is the best thing that's ever happened in the public health and mental health. And I just, I really want to emphasize how fantastic this is, and how far it needs to go. So, with that, I want to make sure we all three are available to you to take questions, and thank you for your attention. Thank you. Okay, please, go ahead. Appreciate the presentation. Thank you. I'm here from Canada, from the province of Ontario. And I work with ACT teams. Most of the times I'm getting patients who've been in the system for a long time. Sometimes, though, they're relatively early on in their illness, but they've been repeatedly hospitalized, sought their treatment, they get hospitalized, and then they'll get to an ACT team. The issue is lack of insight, which, of course, in schizophrenia is very, very prevalent. You didn't touch on that yet. I guess what I wanna ask you is, certainly you're dealing with patients who simply refuse their medication sometimes, probably a lot of the time. How do you deal with that? And then when you discharge them, how do you deal with that? And I guess, sequentially, there's the issue of the patient not wanting the treatment, and you're also limited by the mental health laws where you are. What is being done, if the laws are, you feel, too difficult in terms of keeping patients in treatment, what's being done to change those laws, if anything? Anybody wanna take that, want me to jump in? In the United States, every state is its own chaotic, organic cluster. I don't know if it's organized in Canada. I have fantasies that it is. That's a recurrent fantasy of mine. Please don't crush my dreams. I believe that Massachusetts doesn't have assisted outpatient treatment. For example, 48 other states do. Some states don't enforce it. Just one example. Like, so if you have somebody who has anosognosia and is gravely disabled or even has a risk of self-harm, you can't engage them in longitudinal treatment. So one of the many things I love about coordinated specialty care is when they're 18 and they're showing up and they're saying something is wrong, right? You have an opportunity to engage in a conversation. I also worked on an assertive community treatment team, and those people were sick or per square inch, and they also were more disaffected from the mental health system, my experience, maybe not yours. That the cycle of hospitalization, treatment refusal, with lack of awareness of illness, the experience was not very engaging. So this idea that you could go to school with or without meds, but with family engagement and support and learn together, like it felt like it created an opening to talk about it, right? And when I worked on an ACT team, I didn't always have that experience. People had become more hardened in their belief that their mental health condition was not part of their experience. They didn't identify with it anosognosia. So what I would say is each state is its own chaotic mess. I'm extremely troubled to tell you that, having been the commissioner of mental health of supposedly one of the best states, which is Massachusetts, I'm here to tell you that we're weak on crisis intervention training. We're behind on peer support specialists, but we love to tell you how fabulous we are. We don't have assisted outpatient treatment, but we love to tout that we, everybody has insurance in Massachusetts, and that's great, and we have a lot of smart people in Massachusetts, not including me, but like, you know, other researchers, like amazing people, but that's not the same as having a coordinated system of care. When I was the commissioner of mental health, we set up 14 PAC teams, and I think four of them still exist, which just speaks to the fragility of it all, which is why we felt getting the coordinated specialty care set aside, which Nune mentioned, into the state block grant, it's about as good as you can get, so that someone won't take it away. I'm not sure that's a very good answer. Assisted outpatient treatment, for example, is extremely controversial, and I can divide a NAMI group of 3,000 people, saying three words, assisted outpatient treatment, I can bring them all together, saying we all need more care and services and housing. Like, it's very easy to separate and bring this group together, because people have very different and very strong feelings. So, I'm not sure that's an answer, but I envy you living in Canada. Oh, that's crushing. Oh my. I see, okay. I did an expert case in Israel, and this whole concept of patient rights and consumer engagement was out of the question. The doctors told the patients what to do, and the patients did it. I couldn't get over it. Like, and so, this appreciation of culture, which Nune is, of course, talking about a disparate aspect of it, you know, it's very a big feature in mental health care, and I'll still never forget that. Like, none of the patients had an expectation that their voice mattered. It was fascinating to me. They did what the doctors told them. Now, maybe I was in one random hospital. Maybe it was an unusual situation. That wasn't the vibe I got. Also, none of the doctors had to wear ties. They were all wearing, like, eyes-odd shirts and flip-flops, and I thought, this is a very interesting world. Anyway, thank you for that question. Hi, my name's Melissa Odell. I founded and run a clinic for young people with psychosis at University of Nebraska Medical Center, and we have a lot of features of coordinated specialty care, but I don't necessarily consider it as a coordinated specialty care program for several reasons, and I'm so grateful for all the advances that have resulted from RAISE, but one of my concerns is that I don't want us to ossify in terms of what we think of as optimal care for this population, and in our clinic, we have reverse-integrated primary care, which I think could be a really important thing to maybe move towards an even better model than the RAISE or the Navigate or OnTrack models, and I'm also curious, because my personal experience has really, I've appreciated the validation that we've had more challenge in engaging black families in any kind of family-based care, and I'm wondering if more of a knee-adapted or open-dialogue approach might be one way to approach that problem, and what kind of dialogue is there going on between people who come from more of that school tradition versus the coordinated specialty care tradition? Matt, you wanna try that? I think a couple of lessons we learned from RAISE and EpiNet so far is two things. One is the best way to try out a new model is under systematic conditions as best as you can, and collect data. I think that is, you make a very good point, and I'm sorry if I obfuscated it, but yes, I think underlying your comment is treatment needs to be personalized, and it's not unreasonable to say that, well, chances are there's not one model that's gonna work for everybody or every family, and options are good. The dilemma has been that we haven't had enough options. I think that certainly your experience means a lot and tells you a lot, and I think that to the extent I can speak for NIMH, I can tell you that we are very open for business for research proposals that don't have to be on this kind of humongous scale, but even starting really small. We have, for example, there's a small, it's actually called a small grant, it's an R03, it's not much money, not much time, but you can get your foot in the door and collect some data and see if there's something worth designing a controlled trial for. Again, I mean, I think that with RAISE, one of the really interesting messages is how the accumulation of serious data over time has made a difference, and even though, I mean, of course, our hope, and Ken points out that we can't take anything for granted, but hopefully one fine day, even the insurance industry would say, well, you know, if this actually makes a difference in the long run, then maybe we should look into this more. No, I mean, I think that, again, it's the sort of thing where the, I'm discussing it on the panel tomorrow, and I'm gonna show, in addition to some of these humongous studies, I'm gonna show a case report. I mean, it's on a different topic, but it's, you know, sometimes just like one example of one patient, one family, you know, send it to Lisa Dixon in psychiatric services, and, you know, that can encourage others to try out your model and see where that goes. I'll add something different than that. Thank you for that question, another great question. Chris Gordon, a Mass General Hospital psychiatrist and one of my heroes, attempted to implement open dialogues in Framingham, Massachusetts, which, unlike Finland, is economically, socially diverse, with 15 different insurance payment structures. And what Chris found, it was a success for the most part, but he found he needed extra money to support the staff, he had to find grants to continue this process. Again, this kind of comes back to money, which kind of comes back to randomized controlled trials. So what Chris is one of my heroes, and I had him present at the NAMI convention about could open dialogues work in the USA? And his conclusion was, maybe, but it has to have a funding structure which is superimposed on our chaotic commercial meets Medicaid meets uninsured mess. And then his experience, again, back to Duny's points, is that different people in the Framingham population actually need a different kind of support. It was very interesting, and he also felt that he didn't have a sufficiently diverse workforce. So I love open dialogues, a fantastic concept, but as a pragmatist, NAMI's thrown all its life force behind coordinated specialty care, and having it up and running, but as the data comes in, we will be behind you on open dialogues, and we have a great advocacy team, and voices of people with lived experience make a big difference in Congress and in legislatures. I think there was a paper published maybe earlier this year or last year. I think one of the authors, it's Robert Coates, Cootes, Coates, and he did an open dialogue. It was a study about open dialogue implemented for individuals in their first episode of psychosis, I think, down in Atlanta. I will say the caveat is, I think there's always a question whether or not open dialogue will work for ethno-racially diverse groups, and engage in them more, but there hasn't actually been a study to look at whether or not that that has, if it's effective. A lot of the studies that I have read is, we have a diverse sample, but that isn't telling me whether or not it actually works equitably across different groups. The other part of that is, I think, I was having a conversation earlier, there's a lot of variation in what coordinated specialty care is. And part of the question is, what's the minimum amount of services for coordinated specialty care? Especially as it pertains to rural places that may not have a person for every single component, which destroys fidelity, sure, but just in terms of functionality and the level of support individuals needs, that question hasn't necessarily been answered. We look at RAISE and one FTE for X, Y, and Z, .5 FTE for X, Y, and Z, but a lot of programs don't function on that, is what we're coming to find out after we've surveyed maybe 200 plus programs. And it's not as straightforward in the actual implementation especially because there's so much of a shortage of providers and there's a lot of turnover. So I would say that question is yet to be answered because there's a lot of programs that will be like, I'm coordinated specialty care with only two providers and only offering IRT, they have a prescriber, and there's some type of family component and that is their coordinated specialty care. And I think maybe part of that goes back to what Ken was saying about a certification for this is the minimum, but there hasn't been a study to actually demonstrate what is the bare minimum that a coordinated specialty care program needs in order for it to be coordinated specialty care and does it have the same long-term outcomes if you had a team of five or six people with full FTE for all of those individuals, what does that look like? And so I will say, even if you decided to incorporate and implement and integrate open dialogue into your model, I wouldn't say that that then is a deviation from coordinated specialty care because there's so much variation. Matt, can you give Duny a grant to study the minimum daily requirement for coordinated specialty care? Because this is actually a critical meta question, right? Because the things she described, Dunkin' Donuts won't pay for until it's demonstrated that that's better than treatment care as usual. Thank you for a great presentation and a very comprehensive answer, really appreciate it. Thank you. Hey there, my name is George Teeford from the University of Florida. I'm a psychiatrist and excited to say that a recent recipient of a block grant to start a Navigate program. So I've got two questions. The one pertains to the beginning of the presentation making reference to what's on the horizon being research on CHR. And I'm curious to know if the NIMH has any plans or if any other agency has any plans to do a RAISE-like study looking at CHR treatment and whether or not there should be robust funding for that as well. I'm going to give this to Matt, but I think SAMHSA has quite a bit of funding for CHR that they roll out periodically. And that's been funded in the implementation of CHRP programs. But I'll let Matt take it on the side of it. But we're supporting a study in Boston right now. Beth Israel, maybe, is the hub with a focus on psychosocial interventions using coaches for young people with clinical high risk. And we did fund Ken's friend, Pat McGorry, in Australia. They have very interesting this Headspace program there, which I gather is like a, for want of a better term, a clubhouse kind of thing. A clubhouse kind of thing for young people. And what Pat taught me when he came to give his lecture at NAMI was that people didn't necessarily end up in psychosis, but they ended up with a mental health vulnerability, panic disorder, depression, trauma. And that Headspace was a safe place to go. And his idea was to change the acceptability of going to such a place. Steve Adelsheim has done the same thing in the Stanford area. He has a program very similar to this. So he used a kind of step care approach of starting with an intensive psychotherapy and moving on to SSRIs, and really kind of saving antipsychotics for as late in the game as possible. I don't think he's published preliminary findings. I don't remember the specifics. But I think the response to the early stages was not as good as he had hoped. So I think more people wound up on meds than had been hoped. But I think it remains a very important area, and certainly a lot of interest. We also don't have the results from the clinical high risk study of early psychosis from the foundation of NIMH with all kinds of partners looking for a biological marker for conversion. And if you look at people's neurocognitive tests and their spinal fluid and their imaging studies and their Madras scores and all these things, can you find a biomarker? Because that would also be a game changer. So we're in year four out of five. They've concluded with their many, many, many people from multiple different areas. With their many, many, many people from multiple countries all around the planet, they're going to need more time. It's not surprising. This is very hard work. But it's the first. AMP is a program. This is the first one for serious mental illness. And I think it represents a seat change. Parkinson's disease is important. Alzheimer's disease is important. Rheumatoid arthritis is important. These are the things that have always gotten AMP support. And schizophrenia was turned down in 2014. So NAMI got very involved with the Broad Institute. And they were like, wait a second. The science is moving ahead. So a long answer. But I think clinical high risk is a very important growth stock. One last question. So I really enjoyed the part of the talk talking about the family peer navigator model. And so two questions pertain to that. One, are there materials available to programs outside of Washington that could try to address the issues you've created and not make the same mistakes of not engaging black families? And the second is, have there been any outcomes that you've tracked that have demonstrated the effectiveness of this model to increase the engagement for family education? No and no. Short answers. The study's still been going on. It doesn't end technically until next year. So I'm going to go into a no-cost extension. So we'll probably go into a no-cost extension. There isn't a manual or anything like that that's widely available. What we try to do is not duplicate efforts, for one. So our family peers are trained by the state. And so that is their foundation. Because a big part of that is, I don't want you to just be trained in this model. And then the study is over. And then you have no job. Or somewhere to go. Get trained in the foundation that's provided from the state. So then you could actually go and serve as a family peer elsewhere. And then we layer that foundation. So it's always meant to be a build-on upon a foundation that is provided from the state. So that can be leveraged in other places. The other caveat and part to also realize is, coordinated specialty care programs, even if they're funded by the block grant, don't necessarily fund outreach. You can't bill for outreach. Which is a big thing. Because how do you actually then engage individuals into the program? The providers need to do a certain level of outreach in their area. And so the family peer navigator model that we've developed is supposed to be a precursor to CSC. Which is exactly why our family peers are not embedded within coordinated specialty care. They're embedded within the community. So even if that was a model to be attached, it wouldn't be funded through CSC. Because most CSC programs don't have family peers. Most CSC programs also don't have peers. That wasn't a part of the original Navigate model. It was a part of the OnTrack model. And so usually there's modifications that come from that. So I don't think that there is a model to span across CSC programs for family peers. Because most programs do not have family peers. Even though I think they should. My name is Neil Richtand. And my question is going to be an extension of the first question about insight. I'm listening to this program from two vantage points. I was involved in preclinical research in early models of psychosis back when Pat McGorry first started his work. And I have to say, I don't think many people in the field would ever have predicted that the progress that you folks have made would have come to psychiatry. I mean, this is just, it's so changed the outcome for young folks with psychosis. I think you really underestimate the gift that you've given to psychiatry. I'm now retired from academia. I live in San Diego. And I'm working in a crisis stabilization unit. We have a really nice network of crisis stabilization units. We have an academic center that Kristin Caden had started at UCSD. We have a coordinated specialty care through the Catalyst program, which is well funded. And the police and others are bringing these folks to us. The issue is, it's the lack of insight. And so the stick rate with the Catalyst program, I'm guessing maybe 5%. So we have this wonderful opportunity to make a difference in people's lives. But the lack of insight is really preventing that on the front lines. So I have no guess as to how you would get at that pharmacologically or however. But in terms of the opportunities for NIMH to make a greater difference, 95% of these folks, at least from my vantage point, don't get into these wonderful programs. So we're big fans at NAMI of Javier Amador's LEAP program. Listen, Engage, Agree, Partner. LEAP. So you don't say to the person, you have schizophrenia. You need meds. What you say is, it's more work. It's more like motivational interviewing, more listening. So there is no pharmacologic fix for insight, clearly. And it's a very hard problem, because it's a logical response. Why would I take your dumb drugs that cause me side effect A, B, and C if there's nothing wrong with me? So it's a critical problem, critical problem. But we're big fans of Javier Amador and his work. And to me, that's the best model that exists for people that are being treated badly and blamed for their illness. It requires so much love, compassion, and support for them to turn around and say, how can I help you and support you? Because what you say is, you want a girlfriend. Or what you say is, you want to have something to do on the weekend. Or what you say is, there's something most people want, even if they don't appreciate that they're ill. So I don't have a good answer for that. It's an intractable and very difficult problem. And I wrote NAMI's first book. And I interviewed a few people that did develop insight taking an antipsychotic. Because I wanted to share the idea that if your family member doesn't have. I also interviewed somebody who was put on AOT, assisted outpatient treatment in Texas, got on Clozapine, and got better. And now he's a national peer leader. So this is complicated. It's not the end of the story. It's a very big challenge. So thank you for all your work and for saying that. Anybody else want to add? I always wonder about this. Because I spend most of my time looking at data. So recently, after we've graphed it, because I'm also a visual person, is about 50% of people that screen eligible for our program don't actually receive services. They drop out in between basically zero to month one. And that's not often spoken about. How many people actually screen eligible? And then how many people actually go on to receive services? And we lose about 50% of people. And I often wonder, it's because they didn't self-refer. They were referred by someone, most likely a family member. But they're eligible. And they need the services. But they don't utilize those services. Because at the end of the day, they can be like, no. I don't want to use these services. Why do I need them? And it's funny, because it's not funny. But in studies, in research studies, especially substance use studies, we have a warm-up phase, where we warm people up before they actually get to the intervention. Most CSC programs don't have a warm-up phase, because that also takes time. And it also takes up space. So if our programs are capped at 30, we don't have an additional 30 spots to be doing warm-up phase to get people one step closer to actually getting the treatment, to just sitting down and talking to individuals and to family members so that everybody's on the one accord. And I think maybe that's part of it, too. People may lack the insight. But we also don't have, then, the time to dedicate to warm them up. It's like, you lack the insight. That's unfortunate. And then they go off there on their merry way. And so part of that is time. And then who pays for that time to do that warm-up phase to get people more so interested into receiving the services? Because I think once they pass that hump, they would be absolutely open to utilizing those services. I wonder, while we agree that certainly there's no pharmacologic treatment for insight, I wonder if anyone's had any positive experience with the long-acting injectables, whether their patients would be agreeable to getting an injection every two or four weeks, as opposed to having to take pills every day. Yeah, most of the clients have been adjourney-specific. I think you better be the last questioner, because otherwise. We can chat with you after, behind. We'd be happy to. My name is Megan Good. I'm a fourth-year resident at the University of Louisville in Louisville, Kentucky. I have both a request and a question. So I counted five EpiNet clinics in 13 southeastern states, which includes my home state of Kentucky, where we don't have any. I know that's not the only coordinated specialty care model, but we have a severe lack of care for our early psychosis patients. And while I'm here and have the ear of the NIMH and NAMI, I'd like to advocate for my patients back in Kentucky. And that relates to my question, how can we work with you, and what are you doing to improve access to care for our psychotic patients? OK. That's a very good question. No, NIMH actually supports research, but then we're dependent on our sister agency, SAMHSA, to actually implement provision of services. I think the, you know, in terms of the NIMH, I think the, you know, in our research and our publications, we certainly try to emphasize where there are issues, such as deserts of care or a maldistribution. Certainly, I mean, what's encouraging, in fact, in that Kane article that we spoke about, I think it's in there is a very nice map of how coordinated specialty care programs, you know, have exploded over the last couple of decades. And I thought your area was in there, but I could be wrong. I would encourage you to contact NAMI Kentucky. And my colleagues and I, they're in the back corner. They can help you find a person. And developmentally, you're young and bright. I want you to consider becoming the commissioner of mental health of Kentucky. If I can do it, you can do it. I knew nobody did nothing. I had no contacts. I never got an MBA or a master's in public health. Nobody wanted the job. It's a horrible job. But the reason you do it is to be in service to what you believe in. I really believe this. And so, you know, we didn't close all the community mental health centers when we were out of money. We had an entire project on restraint reduction. This was before coordinated specialty care was invented. We set up assertive community treatment teams. We had DBT training for all of it. Like, we were doing cool things. We just didn't have this cool idea. So I know that sounds ridiculous. And very few people at the APA would consider that to be a viable career track. Consider taking leadership jobs. Because the reason you take leadership jobs, you can still see patients, right? But the reason you do this is to distribute money. This is all Kentucky money. So this is not the federal government. This is Kentucky. Right, I'm not saying I know exactly how this all works. How could you? None of us do on the panel. How could you possibly know? Even our Canadian friend was humbled. I know we're still severely underfunded. And I just want to advocate. So I'm going to connect you with my friends in the corner there. I'd love to talk to them. You should get to know NAMI Kentucky. We love young psychiatrists who want to hang out with us. We love them. OK, thank you. Thanks, everybody.

mental health treatment

early psychosis

Community Mental Health Act

deinstitutionalization

community-based care

coordinated specialty care

RAISE project

therapy

family support

medication management

cultural competence

clinical high-risk programs

systemic barriers