Session 3: NIMH 75th Anniversary Event 3
• 75th Anniversary
Transcript
DANIEL HANDWERKER: Good afternoon and welcome back from your break. My name is Dan Handwerker, and I'm a staff scientist in the section on functional imaging methods in NIMH's Intramural Research Program. And it is my pleasure to introduce our next group of speakers.
Jahn Jaramillo is a doctoral candidate in the Division of Preventative Science and Community Health at the University of Miami. His research is centered on the health of sexual and gender minorities with a particular focus on integrating identity and cultural considerations into health promotion and HIV prevention strategies.
He is also dedicated to developing and testing HIV interventions that provide medically appropriate and culturally-competent care to Latina communities in South Florida.
Alexandra -- Alessandra Angelino, who's going to be participating remotely, is a pediatrician and fellow in the Department of Adolescent Medicine at the Johns Hopkins Center for Indigenous Health.
Dr. Angelino earned a medical degree from the Robert Wood Johnson Medical School and an M.P.H from the University of Washington. And she completed a pediatric residency training program at the University of North Carolina Chapel Hill.
Her research has focused on the health of Indigenous children and adolescents, including work relating to sexual violence and trafficking in Indigenous communities.
Dr. Brittany Rudd is an assistant professor in the Departments of Psychiatry, Psychology, and Law at the University of Illinois Chicago. Dr. Rudd completed her doctoral training in clinical science at Indiana University and postdoctoral training in implementation science at the University of Pennsylvania.
The central theme of her research is to accelerate research-to-practice implementation in settings that support young people who are marginalized due to race, socioeconomic status, and other factors. She's especially focused on efforts to transform the current legal system into one that enacts an equitable justice and promotes mental health.
Dr. Oladunni Oluwoye is an associate professor in the Department of Community and Behavioral Health at Washington State University. She received a master's degree in clinical psychology from Alabama A&M University and her Ph.D. in health promotion and education from the University of Cincinnati.
She is a health services and disparities researcher that utilizes culturally- and community-informed approaches to address inequities in mental health care. Please welcome to the stage, Jahn Jaramillo.
JAHN JARAMILLO: Hello, everyone. Muy buenas tardes. My title for today's talk is called "Advancing Mental Health for All: Future Directions for Healthier Tomorrow and LGBTQ+ and Latinx Communities."
I wanted to start off by giving a big thank you to the event organizers at the NIH for planning this event and for extending an invitation for me to be here today at the biggest stage yet for me as an emerging scholar, scientist, dreamer, and leader in the field of HIV and public health. I never thought my journey to help my community would take me here in front of you, of esteemed colleagues in the field of mental health research.
Before delving into my vision of the future for mental health, I'd like to briefly talk a bit about myself as a person. I am Jahn Jaramillo. I am 34 years old. I was born in July. So, that makes me a cancer. I am emotional. I am loving. I'm a son and a brother. I'm someone who loves to learn and is curious about the world and appreciates human connection in all its forms.
I also possess intersecting identities. I'm Latinx. I'm a Colombian immigrant. I'm bilingual. I'm gay. I am someone living and thriving with HIV. I am a survivor, which leads me to my career trajectory.
I'm currently a Ph.D. candidate at the University of Miami, working on ending the HIV epidemic in South Florida. My research focuses on Latinx sexual minority men and developing strategies and programs that support our health and wellbeing in the areas of sexual health and mental health.
Recently, I was awarded an F31 grant to culturally adapt an evidence-based employment as HIV prevention intervention aimed at addressing the structural factors driving HIV disparities among immigrant Latino men who have sex with men in South Florida.
This project involves gathering feedback from the community and experts in HIV prevention, employment, and mental health to ensure the intervention is culturally grounded for Spanish-speaking Latino men with recent immigration histories.
My goal through this research is to unpack the diverse needs of subgroups within the Latinx community, ensuring we are not treated as a monolith, but rather receive the care that is tailored to our specific needs, preferences, and circumstances.
Additionally, I aim to make the intervention status neutral, focusing on meeting the needs of a disproportionately impacted subgroup within the Latinx community, one that often faces marginalization and erasure within the healthcare system.
Before I move on, I want to add -- and I wrote this down -- I received a perfect score on this F31 grant. Beyond -- thank you very much -- beyond being immensely proud of myself, I'd like to share that for me shows in so many ways that projects like these are not only needed but have huge relevance for the communities that it's trying to serve.
In thinking about this year's theme, Celebrating 75 years of Research Discovery and Hope, I'd like to share a story about a recent experience that profoundly shaped my vision for the future of public health at the intersection of sexual health and mental health for communities that I'm a part of and that I wanted to support and protect.
This past summer, I attended a summer intensive program in Intersectional HIV Science at Northwestern University, which invites yearly, a small cohort of trainees in the behavioral and social sciences who are Black, Indigenous, and people of color, as well as sexual and gender minorities to attend a series of lectures and workshops.
I met such cool people there. And for the first time, I was in a space where the queer nerd in me was fully accepted. I could nerd out with colleagues who profoundly understood me, something I've never had access to in my life. I went too fast.
On the top left, we have Wei in red, who was recently hired as a professor at a top university in California and conducts research with queer communities in China. Then there's Alex with glasses who develops at-base interventions for LGBTQ+ communities. And Cris on the far right, a sexologist who supports queer and immigrant communities in Arkansas.
We were able to connect through our intersectional identities and build meaningful relationships with other queer academics, including some who were open about living with HIV. Seeing them as role models meant so much to me at this point in my life.
Participating in such an affirming space allowed me to deeply reflect on the future of public health and mental health for our communities. In that space, I began to think about three critical areas for the future.
One, a vision for future health research priorities that I would like to see. Two, a vision for supportive structures to help scholars like me further develop. And three, a vision for community being central to the future of mental health research.
First, regarding my vision for expanding future health research priorities, I believe it is crucial that we broaden our research agenda to focus on other specific areas related to human sexuality, LGBTQ+ health, and the health of Latinx communities.
This means engaging gender and sexual minorities who are often overlooked, particularly those who do not fit in traditional categories like cisgender or monosexual to ensure that all communities under the LGBTQ+ umbrella receive the resources they deserve.
Too often, these groups are left out of research initiatives, which leads to limited resources and tailored interventions that truly address their needs. For example, we need more research focused on the health of bisexual individuals, transgender people, and other underrepresented groups such as immigrants and Indigenous or First Nations communities, people who have historically been underserved and who often do not participate in or are excluded from research initiatives due to deep mistrust of institutions who have harmed us.
Expanding our research agenda in these areas is not only necessary but urgent. By addressing the needs of diverse communities, we can create a more inclusive and equitable healthcare system. It is important to deconstruct broad terms like LGBTQ+ and Latinx to ensure that all groups within these communities receive the resources that resonate most with their values and their realities.
Nuanced, culturally-responsive research is essential as generalizations can lead to missed opportunities for effective care and support. This requires moving beyond simply collecting data or using white populations as a default comparison group.
Instead, we must rely on and truly listen to LGBTQ+ and Latinx communities, prioritize their stories, and allow their voices to shape the research agenda in ways that directly reflect their unique experiences and needs.
Second, my vision for building supportive structures for scholars and supporting the pipeline, which we spoke about before, involves doctoral students and scholars like me who are dedicated to making a change.
Additional efforts are needed to develop better infrastructure for minoritized scholars who often face challenges unique to their experiences. I propose an NIH-sponsored conference for early career researchers, including recipients of predoctoral grants like the F31 or T32, especially those from minoritized groups or working in niche research areas.
Too often NIH institutional initiatives to support underrepresented minoritized scholars target postdocs or junior faculty only. However, reaching out to predoctoral and other graduate students earlier in the pipeline could be game changing.
Academia can often feel isolating, especially for those of us who represent the communities we aim to serve. Navigating academia of both a scholar and your authentic self, whether LGBTQ+, a person of color, or someone living with HIV, can feel like walking a fine line between pride in your identity and the fear of rejection.
I have experienced that isolation firsthand in moments where I questioned whether I truly belonged in spaces that didn't feel like they were made for me. How many of you have felt the same? I know I have.
There's an unspoken element of shame and stigma that often forces scholars to hide parts of themselves or retreat into isolation. That's why creating additional resources and spaces for scholars like us is not just beneficial, but necessary.
These spaces could provide opportunities for us to come together, not only to share our research, but to affirm each other's identities or lived experiences. We need places where we can build community, feel seen and valued, and know that we're not alone in our struggles.
When we have spaces to connect with one another, we become more resilient, more empowered, and more capable of making meaningful impact both in academia and in the communities we care so deeply about.
The conference I'm envisioning could include targeted leadership training, peer mentorship programs, and professional development workshops to help build a strong network of scholars.
For example, imagine an annual event where students like me, those working in mental health, HIV research, and LGBTQ+ health, can come together not just to present our findings, but to build lasting relationships, to share tools and resources, and to ensure we are supporting each other throughout our careers.
As researchers, we often talk about peers and centering people with lived experiences at the forefront of HIV and mental health research initiatives. The focus on communities should also extend to the scholars themselves who are conducting the research, supporting their mental health, given the proximity to the communities they partner with, and the shared experiences they have with communities.
Fostering bidirectional support between scholars and community can create a healthier, more sustainable environment for wellness. And lastly, my vision for community comprises a world where research is co-created with communities, where they not only participate, but ultimately take ownership of the research process.
This approach ensures sustainability. When communities are deeply involved, the research becomes more organic. And dissemination happens naturally because they understand and are invested in the outcomes.
In an ideal world, research with Latinx and LGBTQ+ communities would no longer be something that is done for them. Instead, our communities would be leading the change, setting the research agenda based on our lived experiences, and defining the outcomes that matter most to us.
What does this look like? This process would involve creating research projects where the community partners are involved from the beginning, helping to identify the research questions, decide on the methods, and interpret the results. And beyond that, the findings would directly benefit the community, whether by improving services or empowering folks with the knowledge to advocate for their needs.
In closing, today is a day for celebrating the incredible work done in mental health research and the contributions each one of you has made in the service of others. Everyone here has their why and the driving force that unites us under a common goal, mission, and vision for the world we want to see.
As we celebrate 75 years of research, discovery, and hope, let us look ahead for the next 25 years to a future where our vision for mental health has become a reality. I celebrate our shared passion for research, not for knowledge alone, but for helping others.
Without these efforts, we wouldn't be -- we wouldn't have the lifesaving treatments like the ones keeping me alive today, allowing me to stand here as a dreamer and as someone committing to making a positive impact in the communities I belong to.
As I reflect on the past to understand where I've come from and how far we've come as a field, I also look forward shaping my journey as a scholar, a person, and a human being in pursuit of a brighter, more equitable future.
I look back to when I first immigrated from Colombia to that moment at JFK Airport -- I know I look cute [laughs]. And to my childhood self, eager to learn, to that little boy, I say, "Done. You've got this, papito."
Our stories will shine. They will be heard. They will resonate in your research and why you do what you do to help others to make sense of the world, to alleviate human suffering, and to create a better world for all regardless of who they are, ensuring that they have access to quality care and the tools they need to thrive.
I'd like to acknowledge the mentors, my family, and the organizations that have supported my personal and academic journey, including the NIH for giving me the opportunity to dream and to work towards a better tomorrow.
Thank you all for taking this moment to listen and for your own contributions to the field of mental health. Let's not just envision, but actively build a future where both scholars and the communities they serve, especially LGBTQ+ and Latinx communities, thrive and where mental health research is not only done for the people, but with them.
Together we can ensure that every person, regardless of their identity, has access to the care, resources, and support they need to live healthier, fuller lives. I have attached my email should anyone listening want to reach out. And thank you so much for this opportunity.
ALESSANDRA ANGELINO: Hi, everyone. Can you hear me okay? All right. Jahn, that was a beautiful presentation. And I'm super inspired going forward into chatting a little bit about Indigenous adolescents with you all. But really, I think we could all just leave right now because that was super powerful.
It is lovely to be joining you all today virtually. I'll be talking about ways we can support the mental health of Indigenous adolescents in the United States looking forward into the future.
I have listed my affiliations here, and I don't have any disclosures. And before I begin, I also wanted to acknowledge that here in the DMV, we are the guests of the Nacotchtank and Piscataway peoples.
And I ask everyone to consider how daily, we engage in the processes of establishing and strengthening the relationships with the Indigenous peoples where we live and work.
I also want us to acknowledge the history of genocide and ongoing systemic inequities as a step towards reconciliation with Indigenous individuals. You can check out the link at the bottom of this slide to learn more about whose land you're on.
In this presentation, I'll cover how Indigenous youth can be seen, heard, and celebrated as we're looking forward into the future of mental health. The four main topics I'll discuss are culture as medicine, data sovereignty, planetary health, and traditional knowledge.
I'll begin with culture as medicine. I first want us to think about the concept of culture as a method for healing and prevention. This has implications for both physical and mental health, and for Indigenous peoples, is really tied to context, namely historical traumas, subtler colonialism, and systemic marginalization that continue today.
These have led to significant disparities for Indigenous communities, primarily by ripping people away from their culture and their connections. Over time, as people have reconnected with their culture and community, we've seen a lot of revitalization and healing.
This is relevant in the setting of the current mental health crisis, where Indigenous youth have higher rates of suicidality and mental health diagnoses compared to any other race or ethnic group in the country. Thus, thinking about ways that we can view mental health intersectionally, especially incorporating culture, is critical.
Intersectional care also recognizes that the methods of care that we traditionally use in the dominant Western model are not relevant or effective or appropriate for Indigenous folks. And so, thinking about how we can promote opportunities for culturally-centered care is really important.
Using culture as a tool for mental health can look like incorporating traditional language in the health encounter, even language learning itself, and utilizing spirituality, traditional medicine, and connection with the land in mental health care. Recruiting and retaining providers who are Indigenous also supports improved mental health for this community.
So, why now? Clearly the concepts of trauma, marginalization, and connection with culture have been important with this community throughout time. But in the last decade, we've seen a demographic shift in the American Indian and Alaska Native communities towards a larger youth and adolescent population.
Since the pandemic, as I alluded to earlier, there's been increasing mental health needs. So, I invite us to contemplate how we can really tap into culture as a tool for prevention as well as healing, as we continue to see this youth population expand.
I wanted to share a model program for indigenizing health promotion carried out by the Northwest Portland Area Indian Health Board. This program focuses on gender diverse and two-spirit youth in particular.
And one of the things that we've seen is that by highlighting the historical presence and reverence of people who were gender diverse over time, youth are able to reconnect with this history and culture and have improved mental health and wellbeing.
So, you'll see in this image here, it's really highlighting that concept of we've always been here, and we'll always be here. And then I have some images from recent events for the Indigenous two-spirit LGBTQ community that also served as opportunities for connection.
And so, this was just a two-spirit gathering on the left and on the right, the Indigiqueer Joy Festival with the drag competition that was held in June.
Getting into a little bit more nitty-gritty in terms of details for mental health care that I've been working on with the Northwest Portland Area Indian Health Ward. We've been utilizing the term Indigenous, gender-affirming care to really incorporate the current standards of care for gender-diverse individuals, plus Indigenous well-being, and concepts of mental health.
So, this really allows folks to kind of have, again, that intersectional model of care and feel more safe in the environments they're seeking care in. It also means accounting for the fact that the diagnosis of gender dysphoria is based, again, on this Western cultural framework where a binary is the norm.
So, instead we've been using this term gender embodiment, which a lot of our two-spirit folks have actually led us down that path, which can really look like a constellation of cultural, anti-colonial treatments.
So, for some folks, it looks like having a therapist as well as a traditional healer for mental health ceremony. It could also look like a care plan that has medical medications as well as herbal treatment for anxiety.
Moving on to the next topic, data sovereignty. This concept highlights how each -- sorry, little slow to advance -- highlights how each tribal nation has the authority to administer, collect, own, and apply data in the way that they choose.
This is rooted historically in each tribal nation's constitutional right to govern its own people, which is unique from other minoritized groups. Attached with this is this concept of decolonizing data.
For Indigenous folks, it's the process of reclaiming data and research, ensuring the inclusion of Indigenous folks, and recognizing the inherent strength of Indigenous pupils. Connecting it to mental health, first and foremost, acknowledging how research and care have been tied to harmful practices, and then coupling that with restorative practices are key.
For mental health in particular, focusing on centering Indigenous perspectives and mental health care is important. So, again, what does mental health look like for an Indigenous person and communities? Similarly, focusing on strengths and resilience and highlighting protective community factors is important.
Lastly, making sure that we're properly reporting race and ethnicity and mental health conditions are critical. There are some cultural traditions and beliefs that sometimes can overlap with mental health conditions, at least in their presentation.
And so, care must be taken to really understand what the cultural practices and beliefs are prior to making an erroneous diagnosis. Without accurate data, communities who've been systemically included will continue to face exclusion in the mental health realm.
Similarly, when we're thinking about the future and data, I like to think about AI and other machine learning models and especially thinking about what is actually important and meaningful to tribes in terms of data in solutions and what data already exists, so, in this way, thinking about leveraging existing data sources in line with Indigenous principles to yield better outcomes with, again, what non-Indigenous folks are doing.
If tribal nations continue to be excluded from these processes, we'll lack data, they'll lack data, AI lacks data. And then ultimately, we're just having less solutions that can be created. I'm personally still trying to figure out AI myself, been experimenting with ChatGPT, and just putting some basic questions about the work that I do, about, you know, very simple things that we all should be learning in elementary school about Indigenous communities. And there's not much.
So, we really have the power as researchers to bridge the gap by partnering with Indigenous communities, fostering data sovereignty, and promoting the ethical use of these data as well as technology to improve mental health. And again, make sure that we're continuing to allow Indigenous folks to have a voice.
Moving on to planetary health and its role in mental health, I wanted to bring up this idea of Indigenous traditional knowledge. Today, about 80 percent of the world's biodiversity is on Indigenous land. And so, over time, Indigenous folks have really developed this unique understanding of the relationship between humans and ecosystems, especially that connection between the land and spirituality and wellbeing.
Because of this and because of the intergenerational passage of knowledge, Indigenous folks, including youth, are uniquely positioned to adjust challenges today. I bring this up because a lot of health risks, including mental health risks, are tied to this close relationship with the land, which is, as I mentioned before, strong for Native folks, including associations with traditional diet, medicine, health, and spirituality.
Forced displacement of Native folks has altered these relationships. And so, again, Indigenous populations are really more susceptible to the health impacts of climate change.
For mental health in particular, Indigenous youth report high rates of climate grief and anxiety, in addition to other mental health issues that stem from historical losses and trauma as they've directly experienced climate-related catastrophes and degradation.
Currently, Indigenous youth have limited power in decision-making spaces. They're often misnamed or just not included or included as the other group. And so, in climate change policy, in research, in mental health, we're really not tapping into the power of those youth.
On the contrary, youth who have been able to participate in climate change work have improved mental health and hope for the future. So, I just wanted to leave us with thoughts about how we can really support Indigenous youth and adolescents in climate advocacy to improve mental health, especially building on that traditional history and that inherent knowledge that they have.
And lastly, traditional knowledge is critical for mental health. Research in Indigenous communities has shown that historical losses, as well as strengths, as I mentioned, are tied to mental health. We know that access to traditional healing methodologies and traditional healers can improve mental health outcomes. And I've listed some of those ceremonies here as well as traditional medicines.
As a result of this, there are many opportunities for us to think about how we can utilize traditional knowledge to improve mental health across clinical research and policy settings. Thinking here -- this is kind of just summarizing that again. But I just wanted to pull out some of the images here.
A lot of the traditional healers that I've been able to meet and work with are well integrated within a rounding team in the hospital. Or instead of seeing a therapist alone, folks will see a therapist and then go see a traditional healer within a one-hour slot, which is a separate issue.
I know most of us don't have one hour, but just recognizing how that access is really important. And I think it's something that, in the way that our health system is set up and our research system is set up, we're not really thinking about the importance or the impacts of that.
So, moving into the opportunities. From a clinical standpoint, thinking about how we can expand mental health services for Native folks within existing health systems, but in particular, increasing access to those traditional providers, both on and off reservations.
Currently, reimbursement for these traditional healing services is not possible. And so, advocacy on this front to CMS and other payers would allow for payment to those providing culturally-safe services.
Building opportunities for youth to also find community with a focus on tradition can also improve mental health by building self-esteem, self-identity, and again, building that network for support.
From a research standpoint, this summarizes a lot of what I spoke about in that data sovereignty section. But again, to summarize, inclusion, inclusion, inclusion, focusing on strengths, community-based co-design, and tribal sovereignty.
And then from a policy standpoint, really thinking about, again, advocating for inclusion. I think here education is important, since we're not learning about Indigenous folks, let alone Indigenous health, let alone mental health at any level of education.
So, thinking about how to incorporate knowledge of historical traumas and mental health to build context as well as increasing funding opportunities focused specifically on Indigenous mental health would have a significant impact.
Creating parity between Indigenous traditional practices and Western medicine and mental health, both guidelines and research, I think also is great. Especially because it would increase buy-in, it would increase culturally-safe care, and also just patient safety, as well as the ultimate goal of improving mental health overall.
So, I hope that this brief talk has allowed us to reflect on ways that we can better see Indigenous youth, hear Indigenous youth, and celebrate Indigenous youth across our nation as well as internationally.
By upholding culture as medicine, the principles of data sovereignty, and by recognizing the impacts of planetary health and traditional knowledge on mental health, we really can work together with Indigenous youth and communities to reimagine and revitalize Indigenous mental health.
And with that, I just wanted to leave a brief shout-out here to the Paths (Re)Membered Project, which has culturally-safe, culturally-specific resources for two-spirit youth which is my main passion.
There's a free telehealth medical -- mental health service run by the program, where youth can just request help. And all the therapists are Indigenous, which is really wonderful. And so, I included that there along with the Instagram and text message page.
But, yeah, I would appreciate everyone listening, appreciate the flexibility to do this virtually, and I hope we can connect in the future. Thank you, everyone.
BRITTANY RUDD: You guys feeling inspired yet? I know I am. Okay. So, I am honored and thrilled to have the opportunity to share my vision for the future of mental health research at NIMH.
It's my belief that in order to move the needle on mental health, we need to envision a community-engaged public health approach. This title was inspired by a quote that many of you may be familiar with.
When NIMH director, Dr. Tom Insel, left NIMH, he was quoted in Science magazine saying, "I spent 13 years at NIMH really pushing on the neuroscience and genetics of mental health disorders. And when I look back, I don't think we moved the needle in reducing suicide, reducing hospitalizations, and improving recovery for the tens of millions of people who have mental illness. I hold myself accountable for that."
And so, I hope to spend the next 15 minutes sharing my vision for moving the needle on mental health. But before I begin, I want to acknowledge and thank my incredible thought partners in this work. This is my research team, my community partners, my mentors, and my funders.
I'm going to start by explaining what I mean by a community-engaged public mental health approach. I'll share how my lived experiences have shaped my vision for this approach. And then I'll provide an example of this approach from my work.
So, it's impossible to reduce and eliminate bias from our research. My lived experiences with power, privilege, and marginalization influence my lens and thus, my research lens. And so, rather than hide that, I embrace it. Because my lived experiences are important information, inspiration, and activism.
And so, important lived experiences for me are that I'm a White woman. I'm a preacher's kid from a low-income community. I'm a mother, and I'm a licensed clinical child psychologist in an overwhelmed outpatient mental health clinic on the west side of Chicago. And so, as a practicing child psychologist, I'm keenly aware of the mental health crisis that we have in the United States.
Suicide is the second leading cause of death among young people today. This is not okay. I, like many of you in this room, have experienced the loss of someone I love to suicide. Our kids are not okay. And we who've lost ones to suicide are not okay. And we have a crisis on our hands among Black youth.
So, this graph is the rate of suicide by race. The orange is Black or African American youth. White are in green. Blue is for all. These are all too high. [laughs] But what I'll point out is that while things are declining for white youth and overall, they are precipitously increasing among Black youth. And one of the things we are not doing well is reaching kids who need care.
So, this is a map of professional shortages across the United States. The darker the blue, the greater the professional shortage for mental health care. Very few places have the care that they need. And these shortages are getting worse, not better.
And while most youth who need mental health care never get it, when we ask the question, who gets evidence-based practices, the numbers are dismal. Many folks aren't benefiting from these NIH investments in innovation. Maybe 3 to 10 percent. And that's because most implementation efforts fail.
And one of the main reasons they fail is because the needs of the end user were not adequately considered in the design of the treatment, which is where the field of implementation science comes in. The field --implementation science is the scientific study of methods to promote the systematic -- woo. Can you hear me better now? [laughs]
The systematic uptake of clinical interventions and programs into routine practice with the goal of improving mental health. It's about moving the needle on health. It's about turning NIMH investments into impact.
And from the field of implementation science, we know that we need to design with the complex service setting and consumer in mind. Hopefully, you've heard that enough today, [laughs] that that is what we need to move the needle.
We need community-based participatory designs where we co-design with the people who will be using the interventions and benefiting from the interventions. Okay.
So, you might be thinking, fine. Great. So, what we need to do to fix the mental health crisis is we need to hire more mental health providers. And we need to use implementation science to ensure that we're getting interventions to the people who need it.
But I want you to pause and think for a moment. What -- for every other public health crisis we've encountered, when it was cardiovascular disease on the rise, did we focus on making sure we hired more -- hired and trained more cardiologists? Or did we think about preventing cardiovascular disease?
And what I'll argue here today is we need a paradigm shift away from developing interventions and doubling down on prevention. And so, that's where I'll spend my time today talking about how we need public health for this public health crisis.
So, my lived experience -- well, nope. Skipping ahead. What is a public health crisis [laughs] approach? So, a public health approach to mental health is not a new idea.
Some of my colleagues, Dr. Mark Atkins, and Stacy Frazier, argued for the need of a public health approach over a decade ago. The idea behind a public health approach is that we have levers of change across the spectrum from prevention to intervention. And at the universal level, we make sure that the interventions that promote health are available to everyone in the community.
At the targeted level, while we're promoting health, we're also targeting those who are at greatest risk for developing illness. So, at the universal level, think of things like fluoride in the water or think about the law to wear a seatbelt. It benefits everyone. At the targeted level, think about breast cancer and colon cancer screening for those who are at greatest risk by age, for example.
And then once we have spent all of our energy that -- or all the energy we can on prevention, then we make sure we have cutting-edge treatments available to target illness. So, voila, community engaged public health, where we centered the needs of community while we seek to focus on prevention.
But what could this look like operationalized for the mental health field? And that's where my lived experience has really shaped my vision. So, I grew up in a small town -- a small rural community, Corcoran, California. It is right in the middle of California's Central Valley. And it claims to be the farming capital of the world.
And farming is one of the largest employers, [laughs] but so are state prisons. There are two in Corcoran. There is a drug rehabilitation center and a maximum security prison, where Charles Manson lived for 30 years.
And so, as a preacher's kid, you'll probably imagine that finances were pretty lame. But that was the common experience for kids in my community. Twenty-nine percent of people in Corcoran live below the poverty line, which is double the national average. Forty percent of kids are living in poverty. I brought the water because I knew I'd get nervous. Okay. So, pause and breathe.
Okay. So, in our country, individual wealth determines your access to opportunity. Because kids in my community were living in poverty, our access to opportunity was limited. So, the Child Opportunity Index measures and maps the quality of resources and conditions that matter for kids' healthy development in the neighborhoods where they live and where they play.
And so, this is the Child Opportunity Index makes up things like quality education, access to safe aftercare programs. And so, this is a map of the child opportunity indices for the top 100 biggest metros. Blue is greater opportunity, and red is lower.
Corcoran has the lowest opportunity index in the entire country. So, in the United States, marginalized youth live in areas with the least access to opportunity. I don't know if this has a thing.
But you'll see here that white youth, who are in the aqua and orange -- yellow are concentrated in very high and high opportunity neighborhoods. Where Black and Brown youth are concentrated in our country in very low and low opportunity neighborhoods.
Corcoran has the lowest opportunity index because 87 percent of our population is Black or Brown. And so, I had a firsthand seat to see the impact of living in a disadvantaged neighborhood, the impact that it had on my friends, on my peers.
So many of the kids I grew up with developed mental health illness, dropped out of high school, started using substances, and ended up in the juvenile legal system. And that's because our access to opportunity influences and shapes our mental health and wellness.
Your neighborhood influences how long you will live. It also influences our mental health. So, to move the needle, we need to ensure that all children have access to opportunity-rich environments. And we can look to Bronfenbrenner's model to kind of start to think about where we want to target.
And so, we need to be thinking about embedding interventions in schools, supporting parents. We also have a parent mental health crisis on our hands. Supporting parents, making sure every child has access to quality education. Supporting churches and spiritual leaders in promoting mental health in our communities.
And the good news is that we have a ton of research on universal interventions that can promote mental health in the neighborhoods and the communities where kids live.
The tricky little problem is implementation. What I've said before is that your individual wealth influences your access to opportunity. And so, in order to start seeing a change here, we have to figure out ways to decouple individual wealth from opportunity. Which is why we need more research on how to promote evidence-based policymaking; another theme that we've heard throughout today.
And this is an emerging area, but we need more research to understand how to do this well. Okay. So, at a universal level, we need to foster opportunity-rich environments for everyone. But what about at the targeted level?
And this is where I'll argue, we have to think about the legal system. Kids touched by the legal system, child welfare, juvenile legal, are at increased risk for the development of psychopathology. I'll focus in on the juvenile legal system because kids in the juvenile legal system are four times more likely to end their life by suicide than their peers.
And suicide is already the second leading cause of death. Kids who are detained -- 50 percent of kids who end up detained think about ending their life. And while we have guidelines to support the implementation of suicide prevention in these settings, my research demonstrates that we are not implementing them well.
So, this is a graph of 10 detention centers in one state. The y-axis is the percentage of the guidelines the center implemented. And you can see that most didn't even implement half. So, my cousin, who died by suicide, he died the day that he left detention. That's a life we could have saved.
So, to move the needle, we need targeted prevention in the social systems that serve highly vulnerable youth. And I have been very fortunate to be able to take a community-based participatory approach to my early career award, where we're trying to operationalize a zero suicide model for juvenile detention.
And in this work, we're centering the needs of Black youth because as I said earlier, we have a crisis on our hands among -- for suicide among Black youth. And unfortunately, because of what I said earlier about the funneling of Black and Brown youth into communities where there are very few opportunities, youth in the juvenile legal system are -- Black youth are overrepresented in these settings.
Across these figures, you'll see that Black youth are more likely to be touched by the juvenile legal system, whereas white youth are more likely to be diverted. And Black youth are more likely to be detained.
And in doing this work, we are partnering with community organizations that do this work day in and day out, who center the needs of Black youth every day. Like BUILD, Chicago, which is a nationally recognized anti-gang, anti-violence, youth development program. And together with BUILD, we have a youth ambassador program of young Black people who are motivated to end suicide in their communities.
And so, these young people have met with us in a reoccurring fashion to eat pizza and develop a vision for ending suicide in their community, especially among youth touched by the juvenile legal system. Together, we have this vision for aim one of my project -- our project.
We want to know, from the perspectives of young Black people with previous involvement in the juvenile legal system, how can we prevent those in crisis from becoming system involved and detained so that we can develop universal interventions? How can we improve suicide prevention across the juvenile legal system so that we can develop targeted interventions?
But our hope and dream together is that our universal prevention becomes so effective that we won't even need the juvenile legal system interventions anymore because they won't be needed. The juvenile legal system won't be needed.
And so, I could go on and on and on about the impact that these young people have had on my science, on the work, on my joy. But what is truly magical about community-based participatory research is how it can also be radically healing.
And so, these young people have worked with us. And this is not an intervention. This is a research project. And as a result, they're saying things like, "This helped my mental health. And now, I can help other people with theirs." "I learned from this -- being a part of this research that you can have -- be struggling with mental health and not even know it. This work taught me words I can use to talk with other people about their mental health."
So, research -- CBPR can be healing and transformative. Okay. So, my vision for the future is a community-engaged public health approach. And what I'd love to leave us with is thinking about, what if NIMH's funding for research mirrored this triangle? Where we focused and funneled our resources on a paradigm shift towards prevention. Where we were really focusing in on community-based participatory work and implementation science so that we could double down on prevention.
And maybe then, the current supply of providers could finally meet the demand for services. I want us to end with a quote from Desmond Tutu who said, "There comes a point where we need to stop pulling people out of the water. We need to go upstream and find why they're falling in."
And so, I hope over the next 25 years, we can build a fence around the river with a community-engaged public health approach. Thank you.
OLADUNNI OLUWOYE: Hi, everyone. Hope you all are doing well. My name is Dunni. One of the nice things about going next to last is that you get to really see that your slides are really dry [laughs] compared to everybody else's slides that look fantastic and have covered fantastic topics and conversations.
And I really have left also feeling inspired by all of other presenters that have come before me. So, my slides are called Thinking Upstream: Equitable Mental Health Services and Research. I am an early psychosis researcher.
And so, a lot of what I'll be talking about will be planted and grounded in early psychosis work but could be applicable to other areas as well. So, as many of you may know, there's been major advancements in the improvement in the level of care for individuals in the early stages of psychosis. Especially here in the U.S. through the form of coordinated specialty care programs.
Because of the initial push and investment from the National Institute of Mental Health, we have seen a proliferation of coordinated specialty care programs throughout the United States, with over 350 programs being implemented. And I'll get to that next point.
But despite the success of -- or the relative success of coordinated specialty care programs in improving the outcomes associated with early psychosis, we still see disparities and inequities in care. And in the types of research that is being conducted with individuals in the early stages of psychosis.
And I want to say that the disparities that we see in terms of low service utilization prior to get into coordinated specialty care. More difficult pathways for individuals in the early stages, especially those from historically minoritized groups and underserved communities. Disparities in engagement once individuals actually get to coordinated specialty care programs.
These disparities and inequities are not new things. They're not revolutionary things that we have just now identified in the past 14 years. We always and have tended to see low engagement, more difficult pathways to care for individuals from ethno-racially minoritized backgrounds and underserved communities where we just see low service utilization.
And part of the reason potentially, that we continue to see the -- these disparities that are not unique to early psychosis care is simply because we choose to develop interventions to address those disparities at the individual level. Rather than thinking about community-based interventions to address the inequities that are driving the disparities that we see through care.
If you all did not have the opportunity to see the opening talk for this series, you should go back online and really see the presentation from Ruth Shim, who really broke down disparities and inequities. And what's driving those different things, which is a fantastic talk.
So, my -- I have been tasked with thinking about, where should we be thinking? Where should we be going? And part of that is tailored to disparities and considerations that we need to take into account that I believe are driving some of the disparities that we see downstream.
So, the first one is cultivate and diversify. In early psychosis work, there was a recent study published in psychiatric services that alluded to the fact that there was limited diversity and lived experience in the leadership of individuals that have been funded through EPINET. That article just was recently published in -- what are we in? 2024? 2024.
Prior to that, there has been an article also published that really spoke about only 13 percent of first authors being published in early psychosis work in leading journals in the United States. And that's 13 percent of individuals from ethno-racially minoritized groups. To the point where, if I want to go down to the nitty gritty, the article even mentioned that there was zero percent of Black authors first authorship for papers in early psychosis in these leading journals.
So, a common thread that we have seen today is really focusing on the training and the mentorship of individuals along the pipeline. We have a leaking pipeline. I have been speaking to multiple people that have -- are presenting today about this leaky pipeline. And this is not a leaky pipeline that just started to leak one month ago or two years ago or five years ago.
It is continuously leaking where even in conversations that I'm having until this day, individuals are saying that I do not want to be in academia anymore. And I think it was Brielle that had mentioned it when she was given her presentation. When she looks up, there is very limited number of individuals that are female, that are Black, that are full professors.
And that has a trickle-down effect. So, this figure that you see on the right, which looks blurry from my end, but hopefully, it's not blurry for you all and really gets home the point, is that we need to be intentional. We see differences in our level-funded grants, in fellowship level-funded grants, in training level-funded grants.
And this isn't very -- this isn't specific to the National Institute of Mental Health. This is for the National Institute of Health. And these do not change. And so, that's one area that we need to be intentional on. It is not enough to simply encourage applications from underrepresented groups.
There needs to be specific mechanisms that are specifically tailored for training and the mentorship of individuals at multiple different stages. From graduate level to postdoc, even to junior investigators or early stage investigators already in academia.
The second part of that maybe touches on what Brittany had said, and I think other people have said as well, is the majority of the interventions that we are creating are not delivered by PhD-level individuals or MDs in community-based settings. They are being delivered by social workers. They are being delivered by licensed mental health counselors. They are being delivered by paraprofessionals.
And so, there needs to be added support; a, to engage individuals while they're in school in order to go into early psychosis and coordinated specialty care programs. Because even though we've seen an increase in those programs, we have also seen a lot of those programs ceasing exist purely based on a shortage of staff and the ability to provide services.
So, my task for that is really thinking about there are mechanisms that are in place to support individuals who are interested in research. Those mechanisms need to be in place that plays an investment to have individuals think about having a career in community behavioral health settings.
Those things don't just impact the services that are being delivered to the individuals that we care for. But those things also impact the research it is that we are trying to do. That also happens to be a lack of focus in implementation science.
We rarely see, in a lot of articles, the race and ethnicity of providers delivering the services that are being implemented in programs. And so, that's one area to address.
The second part, which has been also a common thread, is more community-based and partnered research. In the field of early psychosis, there has been very few studies that have been developed that have been community-based and truly community-partnered work.
It is not enough just to say that you have a community advisory board and then your work is community-based work. It's also not enough to think about, we know that these disparities exist. And yet, there are very few studies focused on specifically ethno-racially minoritized groups and underserved communities in early psychosis that have used community-based participatory methods.
So, one thing to consider is a restructure of the R01, one that takes into their account; a, it takes a lot of time to build trust in communities that have been historically mistreated. And have a lack of trust in researchers and in academia.
Part of that is also due to the fact that on the sustainability end, when the research is done that most researches are done. And that information is not being funneled back to the communities that have eagerly participated in those studies.
And so, while this looks like an arrow, it actually should be a continuous feed-around loop. So, is it that much to say, can we restructure an RO1 that includes additional time for the building of trust in communities, but also builds in additional time for the sustainability of the findings that come from that study.
So, it is able to feed back into the communities and then regenerate itself. So, that would be my one thing. Restructure the RO1, give us more money, more time. The third one is equitable implementation. We have seen over the last few years a lot of implementation science frameworks -- lovely -- a lot of implementation science frameworks be readapted to account for sustainability and equity.
This is a picture -- but I'm thinking about equity in multiple different ways. This is a picture of currently funded EPINET science throughout the U.S. That's the big -- like, you know, the Shazam colors that you see. The little dots are the clinics that are participating in those EPINET programs.
So, one, are we actually reaching the communities that most -- that may need to participate the most or would benefit the most from coordinated specialty care programs and learning health networks, which is what EPINET is. What you can see is that there's a lot of area within the United States that is not covered.
And what you can also see that there are several programs funded in -- on the East Coast. How much more can we know about the East Coast?
And so, one thing to consider is the continued investment of EPINET so that it adequately represents the United States and it captures individuals from different states. Because Black people and their experiences in the South are very different from the Black people that are residing in or are in New York and the experiences that they have.
And so, those nuances need to be captured. But part of that is being thoughtful about, who's receiving funding? And, does it adequately capture and include individuals from various communities throughout the U.S.? My little bonus on the end is for all health services intervention. And that there is no point in creating an intervention if it's not going to be implemented or it cannot be implemented. That is wasted money.
So, at the very least, all services and intervention research should include elements of implementation science. And if I would've taken a step further, they should probably, at the very minimum, be hybrid, type-one studies.
All right. Third one. Oh, no, fourth one. Last one. Collaboration. This is really for NIMH, is to leverage your position as a federal agency. We have heard from several different individuals. And I think there was also -- Chyrell's colleague also presented a question about sustainability.
And part of that is leveraging your position as a federal agency to elevate community-based interventions that have been successful, that are coming out of your portfolios. By being the bridge between a PI who may not know how to connect with a state level official. Who may not know how to connect with a department of housing or a department of transportation, in order for those policies to change, in order to make meaningful change.
That, I think, is one of the major things that is the biggest issue, is that we know that there are these upstream level determinants. There are things that are happening within communities. It is a lack of opportunity and limited resources.
And how do we actually make and invest in changes to the environment so that we can see sustainable changes in the long run. So, overall, it takes investment. It takes investment in order for there to be sustainable changes. And that's where I'll end. Thank you.
DANIEL HANDWERKER: Thank you. That was amazing, doc. You were more humble at the beginning to those -- every one of our talks was amazing. So, I'm welcoming everyone up for a moderated discussion. I'll also stress that if you want to ask a question, please go to the microphone so people online can also hear.
DAWN MORALES: Hi. My question is probably mostly for Dunni. Thank you so much for your talk. My name is Dawn Morales. I'm director for American Indian Alaskan Native and Rural Mental Health Research.
So, you recommended that the NIH consider restructuring the RO1 funding mechanism. And I would like to know, the NIH does have a number of two-part funding mechanisms, where the first part either automatically converts to the second half of funding. Or sometimes the person has to come back in for review formally.
But the first part, they are to establish feasibility or acceptability or to gather pilot data. There are milestones at the end of that first part of funding that are met that permit them to go to the second part.
So, I was curious to know what kinds of milestones you would recommend that we consider if we were to restructure that RO1. So, you suggested that that first part would be used to build trust. I think you had a couple of things. So, my question would specifically be, how would review at NIH know that those kinds of goals had been met?
DUNNI OLUWOYE: Is this on? Can -- you can hear me. That's a good question. I was just throwing things out there --
[laughter]
-- and hoping that you would catch them. But I think that -- since it's been caught and then it's been thrown back at me, I think that it's -- it could be multiple different things.
So, if I am -- I would -- I'm still in early stage. I want to be in early stage. If I'm an early stage investigator and I am in academia, and there's a tension between things that I have to do academically and things that I want to do because I have a passion for it.
Then part of that is it allows built-in time to cover my time as a researcher. As well as time to actively seek out different partnerships within a community. And so, it wouldn't necessarily be that there would be an exact measure of trust. What about could it be, how many group organizations want to participate within the community? That could be measured.
Another thing that could be measured is, how many community advisory boards meetings did you have? And the attendance rates of those community advisory boards. Because people can have them and then you could still have like 20 percent attendance. And so, that could be measured. And so, that allows for, a, a place for co-production and co-design.
And so, those milestones are in place. And then you have your regular RO1 that you're building out. And the same thing for sustainability.
There's -- in the human subject's portion of a -- when you submit a grant, you're asked to think about dissemination. But is -- are you writing that in a very meaningful way in terms of how you're going to disseminate? Or are you just saying, "I'm going to publish my four articles and then X, Y, and Z?"
But the sustainability plan is what plans do you have to engage city officials? If your findings are X, Y, Z, or even if your findings do not pan out that way, what is your actual plan? Do you have buy-in from that city official that they are even willing to meet with you about the study it is that you're conducting?
And I think that there's ways to build into that. And I think it's also being mindful of the fact that, yes, there are other mechanisms, like an R61/33. But in the mindset of individuals, people are wanting the RO1.
It doesn't matter if the R61/33 is giving the same funding -- the same funding amount of money or the same amount of use. People are seeking out an RO1. Because we're taught from we babies that you reach this milestone when you get the RO1, not the R61/R33 or the R34.
And I think that there's ways to build that out so that it is meaningful. And it actually captures individuals that are truly doing the community-based and community-partnered work. Yeah.
DANIEL HANDWERKER: So, I don't see any other questions in the hall right now. But I have a question then. Several of your talks talked about reaching people earlier and getting them before there's a crisis. And it feels like a lot of policy and in practice and implementation is waiting for the crisis point -- like its peak.
You know, even my kids, their extremely well resourced Maryland school system, when does the school provide service? When there's a direct risk of a kid failing or leaving school, which is often too late.
So, how would you sort of push things earlier and say, you know, in all these areas, in all these community building, so that schools have a resource? Like, what would be your dream for like how we reach kids earlier before they're at that crisis point of like, hey, you've started failing classes? Hey, you've had an episode of psychosis in school.
BRITTANY RUDD: So, I think our -- the way in which we approach mental health is very much based on the fact that we can get reimbursed for clinical services that have been deemed, you know, not FDA approved. I'm a psychologist.
But [laughs], you know, basically, poor clinical service delivery. And we don't have similar mechanisms to think about prevention. And so, I think some of what we need to be thinking about is, how do we reimburse for the prevention aspect of things? How do we fund putting health in mental health rather than focusing on mental illness?
And so, I think, how do we make sure there's been a lot of changes in Medicaid to think about some prevention? But we need more. We need -- like why do I -- why am I only able to bill for mental health services if I'm sitting in my clinic? Why can't I go to the school? Why can't we bill in alternative ways?
And I -- so, I think there's a lot of funding issues because there's so much that goes undone and unsupported and unfunded. So, I think we have to rethink about promoting health rather than waiting for illness and funding that.
JAHN JARAMILLO: Hello? Hello. I'd like to chime in on that as well. In my work with Latino sexual minority men in South Florida, I think through our community advisory boards and our work -- qualitative sort of work with them, it's the same thought.
When we do bring this idea of mental health, in Espanol, it's like, "No estoy en crisis." I'm not in crisis, right? So, how do we take this public health approach to mental health and really bring it to communities that are at really high risk and are vulnerable to HIV, right? Are we only just focusing on HIV? And what does it mean to have an HIV epidemic, right? We know that that's also connected to other epidemics.
You know, the syndemics, right? The concept. And so, these co-occurring sort of systems and how to create or develop intervention packages that really think about prevention in a more holistic sense of like, not only am I thinking about how to reduce HIV vulnerability among Latino sexual minority men.
But how do I incorporate wellness? And that also resonates with Latin Americans. That resonates with their language. That resonates with the ways in which they see stigma. And how they, at times, can -- and we, at times, can bring that across to the United States if we're immigrating. Which is another -- something to consider in terms of this whole cycle of immigration as well. And what people bring and how interventions that are trying to reach communities like Latino sexual minority men should really consider sort of a mental health and prevention as well.
DUNNI OLUWOYE: You know, if I had a wish list, it would be that -- like, I've asked participants, you know, what would be helpful? And individuals are like, "I would love to hear about it on the radio. I would love to hear and see it just as much or frequently as I see medication ads. I want to see things that really focus on stigma."
It's -- there's been numerous studies that have spoken to the fact that ethno-racial minoritized communities seek out informal resources prior to even getting into formal services.
And so, part of that is creating partnerships with local resources, like, the YMCA or community centers and educated individuals at those places. So that when people do get to those places, people are well informed and have the resources that can guide them to the appropriate settings.
And so, my thing is, do a national campaign and have like these famous people in there. And they're all talking about, you know, things related to stigma so that people are just well aware and well informed.
DANIEL HANDWERKER: I think we have time for one more quick question.
DAVID DELAHUNT: Hey, guys. Dave Delahunt [phonetic]. Thanks for all your work. This question's mainly for Alessandra but would love to hear anyone else's perspective as well.
I'm curious your thoughts on the opportunity for increasing accessibility to traditional natural mental health medicine, such as psilocybin and peyote and ayahuasca. Thanks.
ALESSANDRA ANGELINO: Yes. That is a great question. I don't know that much about those besides, you know, general colloquial knowledge. I do know that a lot of the healers that I've spoken with have a lot of qualms with them being used more commonly.
And just because there's sort of that leap that happens between, how are we using these in a traditional way? And how are we misusing these in kind of appropriating them? Similar to using sage and smudge ceremony and like smudging and -- that has a lot of spiritual meaning.
And so, for instance, yeah, you might see behind me like someone has gifted me a sage bundle. But since I'm not indigenous, I will not use that. However, now, they're being mass produced. And, you know, people will kind of use them willy-nilly without understanding the meaning behind it.
And so, I have spoken with some folks specifically about psilocybin. And I think they're excited about it. But I don't think that one in particular comes up a lot in a traditional manner.
But along the same vein, I think there is a lot of openness to trying some of those complementary and alternative methods. But not necessarily a way to do things safely on a mass level. And then also, to have that reimbursement issue, which a few of us have alluded to.
DANIEL HANDWERKER: I'd like to thank again, all our speakers for all -- and all -- everyone here for your questions. I'd like to invite the panelists to return to their seats. And welcome up and NIMH's scientific director, Dr. Susan Amara to introduce our closing speaker.