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Identifying New Directions in Mental Health Disparities Research: Innovations with a Multidimensional Lens - Day One, Part One

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CRYSTAL: Great, thank you, and welcome. My name is Crystal Barksdale, and I am the chief of Minority Mental Health Research in the National Institute of Mental Health Office for Disparities Research and Workforce Diversity or the NIMH ODWD. On behalf of the NIMH ODWD, and the National Institute on Minority Health and Health Disparities, NIMHD, I want to welcome you to our virtual disparities workshop, “Identifying New Directions in Mental Health Disparities Research: Innovations with a Multidimensional Lens.” In acknowledging the persistence of mental health disparities and that questions remain about how to best address this problem through research, we are excited to be able to bring together a dynamic and diverse group of researchers to highlight and identify the innovative approaches to understand and address mental health disparities across major areas of mental health science and research. Over the next two afternoons, we will be discussing a range of topics related to mental health disparities research and engaging in dialogue around key questions to address gap areas, identify research priorities, and understand the challenges and opportunities in mental health disparities research. This research ‑‑ this workshop will be recorded and made accessible on the NIMH website. This typically takes a little bit of time, but we invite you to use this option if you're unable to attend any part of this workshop in real-time. Next slide, please. I want to review a few housekeeping notes. You're being entered and will be entering in listen‑only mode. Questions will be exclusively entered and taken via email. So please submit your questions for the panelists to our email, disparitiesworkshop@mail.nih.gov. Questions not addressed during the meeting may be responded to post‑meeting. This email address for questions will be posted to the chat box for easy access. If you have technical difficulties hearing or viewing the meeting, please note this in the Q&A box and our technical support will assist you. For technical assistance can also send an email to events@1sourceevents.com. Now I am pleased to introduce Dr. Joshua Gordon, the Director of the National Institute on Mental Health, NIMH and Dr. Monica Webb Hooper, the Deputy Director of the National Institute on Minority Health and Health Disparities, NIMHD. Both of whom will be providing a few welcome remarks. For additional biographical information, I invite you to please see the agenda on our workshop website, virtualdisparitiesworkshop.com, which includes web links to all of the speakers' biographies. I warmly welcome and thank Dr. Gordon and Dr. Webb‑Hooper for their remarks.

GORDON: Thanks Crystal. I want to add my thanks to Dr. Monica Web-Hooper who is joining us from NIMHD and particularly to all of the panelists and speakers who are joining us today to give us some insight into their approaches and to discuss how to move this field forward in as productive a way as possible. And I want to thank all the attendees for joining us today. As the Director of the National Institute of Mental Health, it's my responsibility to oversee a research portfolio that will benefit all individuals. And the mission of the NIMH is very clear, is to advance the understanding and treatment of mental illnesses. And we can't do that if we don't take into a consideration the diversity of the populations around the globe that we serve. We have to acknowledge, given what we know, two important facts that, number one, the research base that we have undergirding our current successful treatments is lacking. It's lacking in the understanding of how to apply those treatments to minority populations. And it's lacking in terms of the depth of understanding of the mechanisms of these illnesses in diverse populations. We also have to acknowledge quantitative and qualitative disparities in mental health exist in the United States and elsewhere. This includes increased rates of some mental illnesses, especially in intersectional individuals. But in other minority populations as well. Increased exposure to risk factors. And barriers to accessing quality care. Third, we have to acknowledge that while we know some about the origins of these disparities, we don't know enough, and importantly, we haven't linked our knowledge of these origins into effective interventions that can ameliorate them. When we think about what we know, we can identify causes that contribute to the likelihood to develop a mental illness or to experience adverse outcomes once developed that are ‑‑ that have undue and outsize impacts on minority populations. These include increased exposure to pollutants, which we know play a role in neural developmental disorders, increased exposure to economic stress, to food insecurity, to violence in many communities. The direct effects of discrimination against minorities have adverse consequences from mental health. And the increased rates of comorbidities, including health comorbidities like diabetes and cardiac disease, which are linked to adverse outcomes in mental health, also play a role. Understanding the mechanisms by which these causes link to mental illness is important from the perspective of the NIMH because we want to use those mechanisms to develop better interventions.

In the intervention space, we know that the locus of intervention matters for minority communities and other communities of health disparity. We know that the physical locus matters in terms of distance to care, but also the context of that care. We know that community‑based interventions work better and we know that some minority populations will get better care if the care is given in places where it is seen more acceptable. But there's more that we don't know in this space, and I would argue that one of the things that we don't really have a good handle on, at least at the NIMH, and I think we at the NIMH need to take responsibility for this, I don't think what we have a good handle on are the best ways to move forward in the field, and that's why we've all asked you to come together today and tomorrow. We want to hear about what you're doing that's particularly innovative and impactful. We want to understand how we can support that work, encourage it, and expand it. And in that context, I'll thank you again for coming and say that I'm really looking forward to these next couple of days to learning from you all. And now I'll ask Monica Webb Hooper, the Deputy Director of NIMHD, to add her own comments of introduction.

WEBB‑HOOPER: Thank you. I want to start by thanking you, Dr. Gordon, for inviting me to help you kick off this important meeting and conversation on identifying new directions in mental health and disparities research. It is such an important topic and very timely. And as a licensed clinical health psychologist by training, this is an area that I have focused on for many years. So, we're here to talk about health disparities, which are a particular type of health difference caused by disadvantage at multiple levels, such as social, economic, and environmental. And given that these are the primary causes, our scientific and other approaches to addressing them must be aligned with the causes. Our research to predict, understand, and reduce mental health disparities must reflect that there are structural and societal factors affecting mental health that are beyond the control of the individual. The populations who experience health disparities are those who have faced systematically greater obstacles to optimal health and can be characterized in a number of ways, including race, ethnicity, socioeconomic status, gender, sexual orientation, and others. And importantly, health disparities are differences that should not exist and are modifiable, which means that we have the opportunity for change. We study health disparities because the significant scientific, psychotropic, and psychological treatment advances that have made have not benefited all populations. This is the wicked problem that is staring at all of us. And it's beyond time to accelerate meaningful progress and move into the third and fourth generation of health disparity science. I think of first-generation health disparities research as the initial step, or understanding what health disparities exist, documenting their prevalence. Second generation health disparities research is the study of the contributing factors and mechanisms underlying risks. Now, third generation health disparities research is developing and testing interventions that reduce and ultimately eliminate them. And the fourth generation of health disparities research involves population level intervention implementation, uptake, and the application of a true health equity lens from the start of our efforts to their sustained completion. We know that the U.S. population is becoming increasingly diverse and the current projections are that by the year 2044, we will live in a majority minority nation. And overall, mental health problems among Asian‑Americans and Latino Hispanics are lower when compared to the majority population and are comparable between the majority population and African‑Americans. Mental health problems are greater among multiple populations, including American Indians, Native Alaskans, native Hawaiians, Pacific islanders, individuals who identify as biracial or multi‑racial, Appalachian communities, and sexual and gender minorities. And the overall prevalence data around mental illnesses or disorders however tends to obscure important variation when racial ethnic minority groups are disaggregated, examined by age group or sex, and whether they were born in the United States or recent immigrants. And after diagnosis, racial ethnic minorities often bear greater severity in chronicity. Now given the times we're living in, I must also mention the COVID‑19 pandemic, which has effectively increased the attention to existing healthcare disparities and other inequities. The physical adjustments, economic hardships and acute losses associated with the pandemic compounded with varying levels of social disadvantage, leaves our most disenfranchised populations ripe for mental health concerns. And as we increasingly shift to telehealth or digital treatment formats, this raises important health services, research, and implementation science questions. And in doing so, let us bear in mind that the benefits of telehealth may be offset by the potential for widening mental healthcare disparities in our already underserved populations. Sustainable adaptations and evaluations for new models of mental healthcare delivery are needed to adjust to this changed environment and should be designed from the outset to prevent disparities in access and outcomes. And in this way, the COVID‑19 pandemic provides an opportunity to rethink and retool our approaches to addressing disparities and mental health delivery.

Population reach is also important to discuss, and I wanted to mention. In contrast to the literature on the underutilization of mental health services among men, racial ethnic minorities, and those with less privileged socioeconomic status, I have learned through many years of practice and research that it's not that populations are hard to reach, or difficult to treat. Or not likely to return post‑session 1. Or enroll in our clinical trials. Instead, systems level changes are needed to ensure equitable opportunities and affordable services provide culturally and community competent care and develop critical masses and diversity in the mental health workforce. The mental health field does not have a pipeline problem for research participants or potential scientists. We instead have problems reaching the pipeline. Selecting the meaningful scientific questions and providing the needed support for success for both of these groups. So, as we move into the next few days of this really important meeting, I ask you a question, one that I urge you to think about now and in the days and years to come. What if we had health equity? What if we had health equity? What does that look like in our collective imagination? Health equity is the aspiration, the highest level of health for all people. To achieve this goal requires that we close the gaps, which are healthcare disparities, that we value everyone equally, address avoidable inequalities, provide supports that are proportional to the needs, and remove barriers to optimal health. Once we have a vision of equity, the details can begin to form, and the path to achieving this goal can be illuminated. I think as a field, we've become almost too comfortable with minimal to moderate change and incrementalism. We speak of moving the needle rather than cranking that dial a full 180 degrees with a sense of urgency and intention. I have a vision for positive change, and it's one that is the manifestation of health equity. So, as you experience the next two days of presentations and discussions, I'll leave the hardest work to you. I challenge and I charge you to formulate new ideas as individuals and as a collective, to think about the challenges related to health disparities and minority health science, and to plan and execute science with the potential to make a real impact. And I will challenge you as humans, as individuals, as scientists, as clinicians, leaders, and as people with the power to make things happen within your multiple domains of influence, to think critically about this path forward. Finally, I want to encourage this audience to use your passion and perseverance to help ensure that everyone has access to the highest attainable standard of mental health. Thank you.

DENISE: Hi. My name is Denise Juliano‑Bult. I am a program officer in the Division of Services and Intervention Research at NIMH. It is my pleasure today to introduce our plenary speaker, Dr. Margarita (Maggie) Alegria, who is the Chief of the Disparities Research Unit at Massachusetts General Hospital and the Mongan Institute. She also holds the Lehnert Endowed Chair at Mass General Hospital Research Institute and is a Professor in the Department of Medicine and Psychiatry at Harvard Medical School. Dr. Alegria has a long, productive, and well‑recognized career in health services research relevant to diverse populations. I encourage you to go to that link that Crystal mentioned to see more detail on Maggie's career. For now, we are very pleased to welcome her as our plenary speaker today.

MAGGIE: Thank you so much, Denise, that was wonderful. I want to also recognize and thank Dr. Josh Gordon and Dr. Monica Webb for inviting me. This is such an important time.
Let me start by sharing my screen, and I want to acknowledge, first of all, my team, because they actually ‑‑ this is the work that is a village approach. Let me start by telling you what I'm going to talk about very quickly. I'm hoping to give you some historical perspective of mental health disparities research and then a call to action. And I definitely want to say that many of the people that I ‑‑ you know, I admire here. So, whatever you can do or dream you can, begin it. Boldness has genius, power, and magic in it. And that's exactly my first message to all of us. We really really need boldness. We need power and especially the disruption of power and magic in giving hope to all that have lost it. I want to walk you very quickly through three topics I'm going to cover in my 30 minutes. I want to say how long we've been really looking at mental health disparities research, for a long time. Then I want to move us through the frameworks that I think we need to address and actually take seriously to understand health and health service disparities. And finally, I want to come up with some suggestions about actions and avenues for intervention.
Let me start very quickly with formative reports in mental health disparities research. You look here, actually, it has been since 2000 that there was an exponential growth in the interest of health disparities. It's like Dr. Fauci said recently, this has been ongoing for 20 years. This is not new. It's just that COVID put a magnifying glass on it. But as you can see here, it started and escalated tremendously rapid. Mental health: Culture, Race, and Ethnicity: The Surgeon General's Report, brought mental health to the forefront. It really magnified and showed how racial and ethnic minorities were bearing the greater burden from mental health needs and were suffering a great loss to their overall health and productivity. It really showed in that report that many of the people that were the pioneers of mental health disparities, issues in epidemiology, evidence‑based treatment, pharmacological treatments, diagnosis and assessment, and how all of that ‑‑ there were serious disparities. Then there was the Crossing the Quality Chasm report that brought the label equitable care as one of the six core aims for improving the healthcare system. It brought to light the importance of social justice. That it was important for him to be effective, efficient, timely, safe, and patient‑centered. But it was the Unequal Treatment (report) confronting racial disparities in healthcare done by the Institute of Medicine that not only brought light to disparities, racial and ethnic disparities, but labeled it unacceptable. That this was unacceptable and brought in health systems, providers, managers, and patients as being contributors to that disparity. It also brought how provider uncertainty, stereotyping and bias was contributing. It moved the magnifying lens from the person to the system, and to the providers.


So, you see that even in the Agency for Healthcare Quality report, quality disparities, we are still not doing better. I just want to call your attention to how we are doing, comparing for example, whether we're improving, not changing, or worsening, comparing 2000 through 2013, 2017, to see on quality indicators how we are doing not changing, or doing worse. And in very few indicators, as you can see here, for Blacks, only in four indicators in terms of quality. For Asians, only in two. For Hispanic, only in five are we improving, and in some cases we're doing worse. I also want to call attention to Cummings’ work here, this is a report of 2019, showing for youth how we're doing ‑‑ we're still having serious differences in minimally adequate depression care. Years ago, we show something similar for adults. Again, we see it for youth, with Black youth and Latino youth, receiving less minimally adequate psychotherapy and pharmacotherapy. So, if we have the data and will reduce the disparities, why do health disparities still persist? And I know that Dr. Gordon talked about not knowing, but, we do have a lot of information. We start by having a history of putting the problems as belonging to the victim, rather than to the systems of care. Rather than to defining the problem accurately as structural level factors rather than individual level factors.
We spend too much time focusing on the victim rather than supporting them. This is pretty recent literature. If you see how people talk about disparities in mental health outcomes, you can see that they talk about the person, not the system. So, for example, here you see low‑income children have more mental health and behavioral health conditions and higher severity of these conditions than children from other socioeconomic status. The outcomes most strongly associated with multiple ACEs represent ACEs risk for the next generation. But in many of this, even in access to care, we talk about the person, not about the system that's failing them. For example, in mental health services, you can see adjusting for lifetime disorders, first generation Hispanics and non‑Hispanic white adolescents and all generations of non‑Hispanic Black adolescents were less likely to receive mental health services. But it is not them, it is us in the system. The providers, the administrators, that have a bigger role.

I couldn't say how deliriously happy I am to have this event. When we think about how we're looking about the goals, where we're defining the brain mechanisms, examining the trajectories across the lifetime, striving for prevention and cures and strengthening the public health impact of NIM supported research, I beg you to focus the attention on policies and systems that are repeating and persisting our disparities. One of my colleagues, Ben Le Cook, he looked at the systematic review of 615 articles about mental health disparities, and what he found is that we have a lot of studies on Native Americans, Asian‑Americans. We lacked information on social and interpersonal pathways that underlie disparities. And we also lack intervention studies that address systemic issues. For example, supportive employment, community‑based wellness, community systems approach.

The other thing I'll bring to bear is that we have a science‑base that is still biased. If you look at NIH research funding disparities, you can see that minority health and health disparities only has 9.1% as the R01 award rate. Compare it to allergy and infectious diseases which is at the end, and it's 15.1%, and if you also look, we have very few African‑American and Black PIs. So, this is an area that we really have to address in making sure that our science also has social justice.

I also want to bring in our using all this racial, ethnic, and national categories as important. But I agree that they should be included in research, but recognizing that they're only markers for culture, for immigration history, for social and economic stratification. And as such, they should be acknowledged. I also want to emphasize the importance of moving funding to children and adolescent services and intervention research. This has decreased dramatically, and we need to make sure that our children, particularly the funding of delivery of effective services, the structure of systems and the development of implementation is keeping pace with the times. We are at the cusp of having programs like Medicaid, Supplemental Security Income, and safety net programs that might be cut and this is time that we have to make sure that we fill that gap.
The third thing is we have not con fronted the need for a paradigm shift. Let me talk about the complex system approaches. I think we're looking at interventions in a very linear way. We're not really thinking about sophisticated and dynamic conceptual models of disparities, like the ones suggested by Diez Roux.
We need to explore models that can try to affect different interventions in the context of this dynamic relationship. This is very central to how fiscal policy is being done today, looking at system tools to try to identify which are the best interventions to launch, to have the best outcomes. And then we need to use more existing data, the collection of new types of data that can help us through this. We also need to think more about ecosocial approaches, like the ones recommended by Nancy Krieger, where we recognize that those with the fewest resources are the ones that are accumulating more hazards and therefore, that's the issue that's contributing to the health inequalities. 

And then, we need to look at work like Link and Phelan, who recognized that we have to intervene with the mechanisms of inequalities, in knowledge, in money, in power, prestige. That ensure that one mechanism is substituted for the other, so we keep the inequalities. And finally, to look at the work of Michelle Lamont, who talks about the individual level cognitive processes that keep on influencing at the macro level and contribute to the production of reproduction of inequality. We need to have better campaigns‑ to change this narrative. So, we need to talk about how there is systemic resource deprivation that doesn't give the same opportunities to all. We need to support those households that are suffering in low‑income families and children of color to make sure that we address the poverty and the neglect that is there. I recommend that you look at a model that we have used where we actually link social position at the primary level as being the culprit. Environmental conduct at the secondary level and psychosocial factor at the tertiary level. Here we really understand that social structure really guides and therefore we should impact health policy and market interventions, and at the second level, environmental influences like the system and community interventions in our local communities. And then we can keep on doing primary and secondary prevention, but we have to start at the top.
I want to finalize my last comments with a call to action. We already I think have a lot of knowledge of what we need to do, and models of how it can be done. We have to extrapolate from other disciplines, but we need to move away from focusing so much on behavior change of individual suffering from behavioral health and use the research and practice to take on needed actions. This is going to require building interorganizational and multi‑sectoral partnerships, to connect supporters in policy, grassroot movements and advocacy, because this is not only research. This is a combination of a village to take it on. We have to change this idea that implicit bias is only at the individual level. We have reinforced implicit bias at the collective level. And we need to address it, especially in having this system to reflect on social justice and monitoring ourselves. This was a call to system level interventions rather than individual level interventions. This is going to take a lot of work. We've started doing some of this work, and for example in the DECIDE intervention, trying to change provider behavior and even client behavior so that quality of care for multicultural patients would be better. And it takes a lot of time and a lot of commitment to do this work.
We also have to change the paradigm of how we give care. The current state is not working. We have to move where people are. We need to make sure that the treatment programs find those that need behavioral services. We need to allow patients to engage and encourage them to participate in diverse, accommodating offerings.
And finally, we have to recognize that relapse is part of a disease process and not exclude people because of it. We have done work showing how more and more, we need to co‑create interventions with the people that we want to change or that we really see as suffering from behavioral health conditions. There's a lot of data showing that many of the social interactions influence health. But we need to understand from them how do they see the problem, how do they experience it, and identify relative to local community and broader context. This is a study that we did on photo stories, on youth in marginalized communities. We worked with four communities and 80 youth to try to come up with what was a problem that was potentially increasing their mental health problems. We went with the youth view of what were those problems to community forums and key informant interviews and together with the youth, we developed an intervention. What we found is the people have solutions to the challenges they confront. In this case, the youth said it was not them, it was what was happening to them that really accounted for the disparities. They had challenges in finding jobs. They have problems in terms of not having places where they could socialize, or vocational centers where they could learn life skills and do different activities. And they needed spaces off the streets to keep away from substance use.

We also need to make sure that we evaluate equity effects of intervention. There's a lot of interventions that we don't evaluate if they have an effect on reducing or mitigating the disparities. Some interventions might be more negative than positive. So, we need to look for interventions that increase and make sure that we reduce the disparities. For policymakers, we need to make sure that we talk to policymakers and do academic community and policy partnerships that allow us to address social determinants of health as central in healthcare. We need to change from thinking that it's all health services, including social and community aspects into our intervention. We need to increase the flexibility of how we do policies to expand access to treatments and modalities of prevention and treatment. Also, we need to make sure we service people where they are with innovative models. If Amazon can do it, if Instacart can do it, why can we not? We have to integrate a more comprehensive package of action in what we call behavioral health. It has to be mental health addiction and infectious disease in a public health framework. And really make sure that the public health framework is part of the whole vision. And accelerate the expansion of mental health and addiction workforces. So, from a public health intervention, we need to invest in structural determinants of health, Neighborhood level legal action and policy change, because every neighborhood has their own issues and problems, and so we should be flexible to that policy. And then we have the center people of color and other community member's voices in the decision‑making of resource allocation. They have to be part of the voice of how we decide on resources and intervention development. And I thank you.


JENNIFER: Thank you very much, Maggie. I think you are a rare plenary speaker that came in under time, actually. So, thank you for that. Great presentation. My name is Jennifer Alvidrez. I am a program official at the National Institute on Minority Health and Health Disparities. And I will be doing the next presentation on just providing a frame for the next two days. You will see some similar themes in this presentation as in Maggie's presentation. Next slide, please?
So, just to frame kind of the goal of this workshop, there are two questions. What do we mean by multidimensional? And why is the emphasis of this workshop on innovations with a multidimensional lens? So, the easiest way to talk about what we mean by multidimensional is to show the NIMHD research framework. So, this framework essentially takes the socioecological model, which has different levels of influence, individual interpersonal community and societal, and kind of cross‑tabs it with different domains of influence, biological, behavioral, physical, built environment, sociocultural environment, and healthcare system. And if you take the interaction of the levels in the domains, you get a series of cells that each contain unique determinants of health. These are just examples listed in the peach-colored cells, but they can be fleshed out his or her tailored for any health condition, any population. And so, any of these in this entire array can be relevant for understanding disparities in health or healthcare, in mental health and mental healthcare.
They may also be intervention targets, so you modify these targets to improve or promote mental health.
Also, part of this framework is that different levels apply not only to determinants of health, but also outcomes. So, we have not just individual health outcomes, but family and organizational health outcomes, community health outcomes, and population health outcomes. So, when we say multidimensional, we're really referring to a multi‑domain, multilevel approach to mental health disparities research. So, traditionally, mental health research has really focused, as Maggie mentioned, really on the individual level. And a whole lot at the biological level and the behavioral level. And that's where most of our treatments are for pharmacotherapy and psychotherapy. Next slide, please. There’s also a little bit related to family therapy and couple’s therapy, and etiological on understanding family and couples functioning. Next slide, please. I think mental health services research has spanned more the levels of influence in looking at determinants of mental health care disparities, though not always following that through with interventions that address all those levels. So, there's a whole lot, if you look at this universe, that may potentially be relevant to mental health disparities that we may not be giving enough attention to. Next slide, please.
Another component of using a multi‑dimensional lens is really moving beyond the individual as the center of everything. So although there is much more appreciation for the role of social determinants, there's still ‑‑ and I can say, you know, from my own clinical training, which actually happened in the previous century, there was much less emphasis on social determinants. You looked at a person's history to understand their current functioning, but you really didn't address current social determinants. In my psychology training, that was considered case management and that was not part of the mental health service that we delivered as psychotherapists. So, I think things have changed where there's more attention to the importance of social determinants. However, we still have that individual lens. So as Maggie was mentioning, from an etiological perspective, we look at the impact of social determinants on individual health outcomes. A lot of research doesn't go to the highest levels of influence. So, some higher levels, structural and systemic factors, such as those related to structural racism, sexism, classism, ageism, ableism, homophobia, transphobia, stigma, discrimination, regarding mental illness. A lot of these things aren't routinely taken into account in research, in mental health research.

With respect to intervention, even though there's the appreciation of the impact of social determinants, often interventions focus on helping individuals kind of respond to these social determinants. So, helping kids cope with bullying. Helping patients communicate with providers who may lack cultural competence. Helping clients or patients who have competing life demands or extenuating life circumstances that make it hard for them to adhere to treatment. We can provide apps that remind them to take their medication, for example. Encouraging individuals to really go to the social support network, to build up their social support networks. And linking folks to resources. So, if someone has food insecurity, we can refer them to a food bank, for example.
So, there is attention but it's still all really with an individual lens. Not all, but predominantly with an individual lens. Next slide, please. So, I think what is needed is really taking more of a population health focus. So looking at the impact of social determinants, not just on the health of individuals, but of families, of mental health within organizations, communities, and populations, and really taking into account those higher level social and structural inequalities that are really driving disparities at the population level. And then with respect to intervention, not just helping individuals cope with them, but actually changing them. So, improving social and structural environments. Rather than helping school kids cope with bullying to prevent bullying in the schools. To eliminate cultural or racial ethnic or other biases in the healthcare system, for example. Building individual, family, organizational, community, and population resilience to weather future storms that we know are going to come because vulnerable populations will be hit over and over again by future public health crises or other things as we're seeing right now with respect to the COVID pandemic. As Maggie mentioned, moving from just thinking mental health treatment to prevention, it's hard to imagine disparities being eliminated just by focusing on what's going on in the doctor's office or the therapist's office.
Next slide, please.
So that is what we meant by multidimensional. Both looking at multi‑determinants of health, intervention targets and also moving beyond the individual and think about outcomes. So why is the emphasis of this workshop on innovation with a multidimensional lens? Next slide, please. Again, as Maggie touched on, the reason we want this focus is that we want to see ‑‑ and this is an example of articles that have looked at trends over time. We look back ten, 20, 30, 40, however many years, that disparities in either mental health burden or access to mental healthcare are either staying the same or getting worse. And so what we wanted to do in this workshop is really to highlight and think about new paradigms, new ways of moving beyond kind of unidimensional research to think about ways that can really move the needle and make a dent in health disparities. So, you'll see as we move forward throughout the day the emphasis is not so much on the current state of health disparities. We really wanted to focus not so much on where we've been or where we are now, but where we're going, and where we need to continue to go. And so all of the speakers that we've invited here today are doing some sort of multidimensional work in some way, and so we're really looking forward to hearing all of your thoughts and ideas for new directions to really, truly address mental health disparities.
So, I believe next slide ‑‑ I think that's my last slide. So, thank you all. And I believe we have time ‑‑ we actually have quite a bit of time. If there are questions about this, since this is kind of the framing as we proceed over the next couple of days. So, you can raise your hand if you are one of the panelists or one of the discussants, or you can put a question in the email.

DENISE: Jennifer, we may have a question. We're sorting that out. Just a sec. 

JENNIFER: Okay.

DENISE: While we're waiting, I have a question. How long has NIMHD been using this framework?

JENNIFER: I think we developed it and published it in 2016. We started working on it, it was kind of a work in progress. It was sort of a hallway project. The people in my hallway, we all got together and talked about this. So, it took a bit to actually get it published. But, yeah, it's been on our website I think since 2016. And we do believe that it's a very flexible framework, so we encourage, if anyone wants to make an adaptation, say a mental health specific framework, or a framework for a specific population, we do recommend adaptation and using a revised framework, and we'll post it on our on the NIMHD website. Currently, we have two revisions, one for American Indian Alaskan Native populations and one for Native Hawaiian populations but could also be revised for health condition or age group or any variety. Thanks for the question.

PARTICIPANT: Okay, can you hear me now?

JENNIFER: Yes.

PARTICIPANT: Okay. So, I'd like to offer to this discussion the notion of contextualized stress, which is a multidimensional measurement of stress which combines the social determinants approach as well as the effective responses. So, the stress is certainly is a risk factor for mental health outcomes such as depression and anxiety. So, I'm just offering that as something to look at. And I can submit some references to this approach, which has long been used as a multidimensional measurement, which includes the social determinants of health including issues of racism and sexism and the intersection of the two.

JENNIFER: Great, thank you. And I do want to point out, you know, when we use terminology like health disparities and social determinants of health, which is not negatively valanced but often we interpreted as such.
There's also in the framework as well as any multidimensional approaches room for resilience, resistance, and protective factors that are important to look at as well. And Tamara Lewis Johnson has a hand up, if you want to unmute.

PARTICIPANT: Yes. This is Tamara Lewis Johnson. Jennifer, thank you for that wonderful overview. I just wanted to know, you know, thinking about your presentation, also in concert with Dr. Alegria. And as we move beyond the individual factors and the focus on the individual to these larger community levels and we think about COVID and how communities have been really hard hit during this time in particular, how do you see structural level changes occurring. so that the community is fully engaged and really feels the effects of improved mental health access and outcomes. 

JENNIFER: Right. I'm trying to think of a time in my past where structural issues have gotten so much attention. So, I think the increased attention to structural issues that are being brought up in the media and in news reports can maybe spur on how our individual level interventions of say health education related to COVID, wash your hands, how do you do that if you live on a reservation for example, that doesn't have running water in the household. And I think the attention brought to these things hopefully will translate into the kinds of interventions, the kinds of partnerships that researchers make with communities and community‑based organizations and public health policymakers. But also, just encourage moving beyond an individual lens now that there's sort of this increased attention to these issues. Did I answer your question?

PARTICIPANT: Yes. Thank you very much.

JENNIFER: Any other questions?

CRYSTAL: We have a question from Maggie.

JENNIFER: Okay.

MAGGIE: I wanted to ask you, Jennifer, how to change reviewers' assessment. How are we going to train them to change from the individual to the structural and systemic?

JENNIFER: Right. So, it's kind of a chicken and an egg, right? The more projects we fund, that have this kind of lens or operating at higher levels, then those investigators get on review panels and there's more and more kind of acceptance and sort of constructive review of a project like this. So, in the meantime, I think there certainly is more attention than there has been in the past. There are certain NIH study sections that have more of a community level focus, and I think I can speak for NIMHD, what we can do is to fund investigators who do this kind of work, then they can join the club that can be invited to do NIH review and sort of change things from the inside. Did that answer your question?

MAGGIE: Yes, thank you.

JENNIFER: Okay. I see Julia Silva has a hand raised.

PARTICIPANT: My question is following what the previous person said, I'm a community psychologist, and worked for many years with the American Psychological Association. My concern is ‑‑ you know, I'm a consumer of research. And I'm translator and disseminator of research. But besides the research and papers and publications that NIMH has to change this paradigm from, you know, seeing the American meritocracy myth, that anything that happens to a person is because of the person. So, this is a huge cultural issue also. So how are you thinking with probably the National Academy of Science, with the professional associations and everybody else, you know, to really change this paradigm because it’s so ingrained in the culture that the poor people, the minorities, they have the outcomes they have because of, you know, the choices they made, they were not willing that much to change their lives like someone else. So, my question is I know NIH is research, but how can you participate with us, the consumers of your research, to think of this to a different level, and, you know, educate the population. I know NIH has done many research ‑‑ you know, like marketing, advertising with the ‑‑ you know, about drugs, about smoking. So, this has been done before. The NIH also engaged in dissemination, in education for the public. About, you know, what the research is showing us. Thank you. Thank you for listening to me.

JENNIFER: Right. I think ‑‑ Maggie, did you want to respond? I see your name up on the screen.

MAGGIE: No, you go ahead.

JENNIFER: Okay. I think you're right about the importance of strategic partnerships with organizations that ‑‑ NIH does have a research mission, so partnering with other organizations that have other direct service delivery advocacy missions. I do think and I have seen a shift in research that is not sort of just free floating, that there is more community engaged research and research that has the potential not just to be published at the end of the study, but that you work with organizations to develop research knowledge that actually those organizations can use. So, I have seen a shift. I think that is something that is changing. Maggie, did you want to add anything?

MAGGIE: I think there is a shift, and I think the person that spoke about the importance of ‑‑ I really love your message about we need to disseminate and do a better job. It's been tragic. We have not included in many of our reports, and really moving this science to disseminate it to our communities to see if that is helpful to them or not. We need to co‑create programs with communities rather than for them, with them. I think that's the biggest shift that we need to do.

CRYSTAL: I see we have two questions. One from Dr. Gordon and we have in the queue on email.

GORDON: So, I really appreciated this discussion, and Maggie in particular, your last comment just then about community‑based interventions as an approach to moving the needle. I think in this field, in the past, we've gotten into some trouble from the perspective of ‑‑ from the research perspective, when we don't focus on research that's aimed at moving levers that we can actually move, right? On the one hand, I think we would probably all agree that if we could eliminate poverty in the United States, that would be a good thing for mental health. Absolutely, right? On the other hand, if we simply say, okay, if we give everyone a basic income of X amount of dollars a year, we could show that that improves mental health. The question is, is that a lever that we can actually move? And so, the last question, comment suggesting that we need to really look hard at the sense of individual responsibility in the United States as a lever seems to me an impractical one. So the question is, what can we ‑‑ what levers can we press that we would want to focus our research on to achieve that goal of having people recognize that systemic change, as many people have said, can improve mental health outcomes, can prevent mental illnesses. I think the speakers so far have given some examples of those kinds of things. So I want to turn this into a question to ask both of you to comment on where do you see the balance in terms of, yes, we need to understand root causes, and for the best prevention squarely aimed at those root causes. But what's the level in which NIMH should be investing in terms of trying to find the right levers to press?

MAGGIE: If you ask me, I think one of the things we should ‑‑ have a pot of money that is actually a pot of money that is across Institutes. I think there is a lot of things that could be achieved if instead of thinking of an illness, we thought about well‑being, and then we actually simulated in the same way people are looking right now at what are the fiscal policies that we should be doing for trying to move the COVID impacts on economic.
I think we should do the same for mental health. I think we should look at what is our best lever. Maybe it is not giving clinical care. It might be something else. It might be giving people in certain areas some sort of security about housing. And maybe we should think about common goals across the Institute that are going to mitigate disparities and might not be illness‑driven but might be policy‑driven. That's where I would go.

 
JENNIFER: That sounds like a great idea, Maggie. And I think also to answer this question as well as one that we have coming through the email. So, there are different levels, and I think researchers can be involved in local efforts that change structural factors. So, for example, within school systems, within healthcare settings, to address if there's some sort of structural bias or discrimination. Or if there are climate issues. You can change the climate within a workplace or a series of workplaces. You can address the climate within schools or look at disciplinary practices or exclusionary practices that schools might engage in. I think there is the opportunity for direct intervention at the organizational and community level for investigators to be involved with. I think realistically, less likely, though there are some exceptions, that researchers can be involved in policy interventions at state or national levels, but I think that doesn't mean that it's not important for researchers to study those things, to show the impacts on either mental health or mental health disparities on existing laws and policies. So, I would say we need to keep looking at all of it and not just say we can mostly operate it within an individual level, so let's just stick with that. I think we are at time, so I will hand it over to Crystal.

CRYSTAL: Fantastic. Thank you so much, Jennifer, and thank you to our fantastic plenary speaker Maggie, and again, Dr. Gordon and Dr. Webb Hooper for your remarks. This has been a fantastic opening to our virtual disparities workshop. We are now going to take a 20‑minute break. So, we will reconvene at 1:30. I would ask that you please come back at 1:30, and for folks, turn off your mic and mute yourself and turn off your microphone. And we will resume with our first panel, Etiology and Mental Health Disparities with moderator Dr. Alex Talkovsky. So, we will see you back here at 1:30. Thank you.

BREAK


CRYSTAL: Great, thank you. Welcome back, everyone. I am pleased to introduce Alex Talkovsky, who is a project officer at the Division of Translational Research. He will be moderating our first panel, Etiology and mental health disparities. So, I am happy to turn it over to Alex. Thank you.

ALEX: Thank you, Crystal. To get us started with today's panel, I'd like to remind everyone that we're going to have four speakers. Each will give us about a seven‑minute presentation. We'll have an updated order from what you see on the agenda. I'll be giving them a brief introduction. I’ll remind you that you can see their full bios on the website, virtualdisparitiesworkshop.com. Starting us off will be Dr. April Thames from the University of Southern California. Then we’ll have Dr. Mark Hatzenbuehler from Harvard University. Dr. César Escobar-Viera from the University of Pittsburgh, and Dr. Janet Cummings from Emory University. Dr. Thames, please take it away.

APRIL: Thank you. Thank you so much for having me here. I will go ahead and share my screen. Good afternoon everyone I will be talking about the biological impact of discrimination and with a focus on how it can contribute to pathways of mental health disparities. All of us on this call have an interest in what I call vulnerable populations, and the reason that these populations tends to be vulnerable is because of what has been discussed already in terms of social determinants of health and we know that these are largely environmental and structural that have an impact on health outcomes. And as we know, there's a reciprocal relationship between health and mental health. So, as we look at older adults who are developing chronic medical conditions, we also have to think about what are the co‑morbid mental health conditions as well. And here, we can see that there is a huge disparity by race and ethnicity. If we look at hypertension, we know that non‑Hispanic Blacks are disproportionately diagnosed with hypertension relative to their numbers in the population. We see this with stroke as well. And for both Hispanics and non-Hispanic Blacks we see high rates of diabetes. And so, this is particularly important because we know, as I mentioned, that chronic conditions can lead to mental health outcomes, particularly adverse outcomes. Now, another reason that these populations tend to be vulnerable is because of social threats. If anyone's ever read "The Social Animal," by Elliot Aronson, we know that our social bonds and ties with others are essential to human survival. Two of the social threats I have focused on pertain to racism and discrimination, because I see it as a very clear social threat.

And directly tied in with a stress response. So, if we think about the stress response, there's two pathways depicted in this diagram. Here we can see that stress coming from environmental context, you know, will have its effects in the brain. It's going to originate with corticotropic releasing hormones, which then can stimulate locus coeruleus, noradrenalin. Then we have the sympathetic chain which actually gets into the immune system and the cells that regulate our immune responses can become activated. particularly with releasing inflammatory cytokines, adhesion molecules, and acute phase reactants. . . . . . . . . . . . . . So, what does that actually mean? We know that chronic inflammation can accelerate both biological and brain aging processes. And, if we start to look at the disparities literature, we know that African‑Americans tend to demonstrate higher levels of inflammatory markers such as C reactive protein. We know that social isolation is also associated with increases in inflammation, and every day discrimination has been found to predict C reactive protein levels across seven years. So, as we think about social threats and how they tie into stress and peripheral inflammation this can have a very adverse effect on health and mental health outcomes. So, one model to sort of think about or paradigm is referred to as the conserve transcriptional response to adversity. And this was really pioneered by Steve Cole and George Slavich, which explains how historic physical threats and social threats are those threats that are perceived or imagined to potentially happen, activate the sympathetic nervous system, which in turn can change the way that our immune cells express various genes. And these genes that are particularly responsible for inflammation as well as antiviral responses. And our team has been very interested in thinking about, well, why is it that we see these disparities with inflammation? We see higher levels of inflammatory markers among African‑Americans. So, one of the questions is thinking about social threats, could racial discrimination explain if we were to see Black/white differences in this conserved transcriptional response to adversity, and is this discrimination more than we would just expect from general stress? So, we did a study where we enrolled 71 individuals who either self‑identified as African‑American or European American/white. All participants completed a measure of perceived stress, about general stresses in their life, as well as racial discrimination and we also looked at socioeconomic status. We took blood draw for extracting RNA, looking at microRNA, to look at gene expression, and what we found was that in terms of our behavioral measurements and socioeconomic measurements, the only Black/white differences that we found were in regard to experiences with perceived discrimination. So when looking at just Blacks versus whites on these different genes, that AP1 and NF-kB that are pro‑inflammatory signaling genes, and then also looking at IRF, which is an antiviral promoting gene, and CREB and GR, which are stress signaling genes, this graph shows that looking at African‑Americans relative to Caucasians demonstrated higher expression of these genes. 

Then we wanted to ask the question, what happens if we control for experiences with discrimination? Would that explain any of the variance in the Black/white differences in CTRA or this conserved transcriptional response to adversity. And what we found was that after controlling for discrimination, over 50% of the gene expression differences, particularly those that promote inflammatory responses were explained by experiences with discrimination. So, this study is providing a beginning step of looking at a potential mechanism of how not just do we see peripheral inflammation differences or changes, but how is that regulated by the immune response and actual changes that can happen in the body's immune response. 

So now thinking about the brain, we know that stress has impacts on reducing monoamines, increasing excitotoxicity, as well as reduction in trophic factors. And as we think about the neurobiology of depression, as it may pertain to stress, the pathways that are typically involved in depressive disorders, the ventral pathway, being the pathway that is our emotional control system as well as the dorsal strain, which is involved in that cognitive control. We know that these two areas are implicated. So earlier I mentioned that not only stress influences the brain's response and the immune system, but also it changes over time that we see with atrophy within the brain, so thinking about mental health disorders is an avenue that might be connected here. So this is just a very simple diagram to start thinking about how these social threats and social stressors that tend to happen among vulnerable groups may be activating the sympathetic nervous system response, promoting gene transcription, leading to these prolonged inflammation and immune changes that not only result in cellular aging, but also may be having an impact on health and mental health outcomes. And as we've been talking about intervention targets throughout the paradigm, thinking about what can actually work in order to intervene. So, with that, I just want to acknowledge my colleagues and say thank you to all of you for listening.

MARK: Hi, everyone. I'm Mark Hatzenbuehler. Thanks for the opportunity to be involved in this panel. I'm going to be talking about some of the work that my colleagues and I have been doing bringing a structural approach to stigma research and the implications of that work for the etiology of mental health disparities. The literature on mental health disparities has documented both distinct and common pathways for psychopathology across disparity groups, and one of those common pathways is stigma. Stigma has been conceptualized as a multilevel construct ranging from individual to structural levels. So briefly, individual forms of stigma refer to the psychological processes through which stigmatized individuals both perceive and react to stigma. These include processes like self‑stigma and concealment. In contrast, interpersonal forms of stigma refer to interactional processes that occur between the stigmatized and the non‑stigmatized. These can include overt events like bias‑based hate crimes but also can refer to more subtle interactional processes like microaggressions. The vast majority of research on stigma has really existed at these two levels of analysis, and that work has been really essential because it's documented many of the ways in which stigma operates to produce disadvantage, but at the same time, this work has been criticized for overlooking broader structural forms of stigma, which my colleagues and I have defined as societal level conditions, cultural norms and institutional policies and practices that affect the lives of the stigmatized. This lack of research on structural forms of stigma relative to stigma at the individual and interpersonal levels of analysis has been called by my colleague Bruce Link, a dramatic shortcoming in the literature on stigma, is the processes involved are likely major contributors to unequal outcomes.

So, over the last decade or so our work has focused on addressing that gap in the literature. To do that, we used a multi‑measure, multi‑method, multi‑group, and multi‑outcome approach to studying structural forms of stigma. So, in the brief time that I have today, I'm going to walk through three illustrative examples to give you a sense of how we've approached this topic.

So, in one methodological approach, we capitalized on the rapidly changing policy environments surrounding members of stigmatized groups here in the U.S., which create unique opportunities for quasi experiments. One of the methodological advantages of quasi experiments is they represent exogenous events that occur outside the control of individuals and therefore minimize threats to validity of self‑selection into the “intervention group.” So, I'll present one example of a quasi-experimental study that my colleague, Julia Raifman, took the lead on. In this study, she used a difference‑in‑difference‑in differences analysis, which enabled us to compare changes in mental distress among LGB individuals and heterosexuals, who lived in three states that had recently implemented laws denying services to same-sex couples in the year 2015, this was our proxy of structural stigma. We compared that to changes in mental distress among LGB individuals and heterosexuals who lived in six geographically nearby control states, that had really similar demographic characteristics but had not implemented one of these laws. Our outcome data and data on sexual orientation comes from the Behavior Risk Factor Surveillance System data sets which are represented in the noninstitutionalized adult state residents. So here are the results. This figure will be showing changes in the percentage of adults experiencing mental distress in same‑sex denial versus control states stratified by sexual orientation identity. Showing here on the Y axis is the percent meeting criteria for mental distress and on the X-axis is time, so 2014 is baseline, 2015 is the year the policy was implemented and 2016 is the follow‑up year.
You can see here that the only group to experience an increase in mental distress during this time period were LGB individuals who lived in states with same‑sex denial laws shown in gray here. There are no changes in mental distress among any of the other three comparison groups. That's equivalent to a 46% relative increase in sexual minorities experiencing mental distress in states that passed laws denying services to same‑sex couples. In these analyses we also controlled for year state fixed effects and that does two things. First it controls for time in variant characteristics, like for example political climate, that could theoretically influence both the implementation of these laws and also mental health. Secondly, it controls for baseline differences in rates of mental distress that differ across states. So, this study and several others like it that we’ve conducted, have shown that short‑term increases in structural stigma are associated with short-term increases in adverse mental health outcomes. But we have also been interested in the flip side of this question. That is, might declines in structural forms of stigma over a longer period of time in a population level be associated with reductions in the size or magnitude of the sexual orientation disparity in mental health.

 So, to answer that question, we used a second methodological approach of longitudinal cross‑national comparisons that capitalize on longer‑term population level reductions in structural stigma. So, I'll present one example of this work. In this study, we went to Sweden, which over the last two decades or so has undergone pronounced declines in structural forms of stigma related to sexual orientation as reflected through changes in their laws and policies, providing sexual orientation related protections, as well as increases in social support and acceptance of sexual minorities. So, in order to examine whether these reductions in structural forms of stigma were associated with declines in the size of the sexual orientation and disparity and mental health, we use data from the Swedish National Public Health Surveys. These are nationally representative surveys, of the Swedish population, conducted every five years. Starting in 2005, they began including measures of sexual orientation identity. So here are the results, on the Y axis is the percent of the respondents that met criteria for elevated psychological distress. On the X axis are the three years. On the Z axis here, I'm showing the measure of sexual orientation ‑‑ sorry, of structural stigma, which was a composite variable of laws, policies, and attitudes. So, this is just showing what I already mentioned which is that there's a decline in structural forms of stigma related to sexual orientation in Sweden that occurred over the study period. So, first you can see here that gay men and lesbians experience a significant decline in the portion of the met criteria for elevated psychological distress over the course of the time period of this study. In contrast, there were minimal changes in mental distress among the heterosexual sample. In fact, the interaction between the year and sexual orientation is statistically reliable, indicating that the decline in the proportion meeting criteria for elevated psychological distress is significantly stronger for gay men and lesbians as compared to heterosexuals. But the key question here for our purposes is what happens to the size or magnitude of the sexual orientation disparity following declines in sexual stigma population level. Here you see that in 2005, gay men and lesbians were about three times more likely to meet criteria for elevated psychological distress. Ten years later, following these reductions in structural forms of stigma, we see the disparity had been eliminated in 2015. So, these findings are important because they begin to suggest that these sexual orientation related disparities in mental health aren't inevitable, but instead are responsive to changes in social context, in particular to changes in structural forms of stigma.

Finally, our recent work has begun to suggest that yet another way in which structural stigma may affect mental health is by undermining the efficacy of mental health interventions among marginalized groups. We've done that using spatial meta-analyses. These are very similar to traditional meta-analyses, except that you geocode where these studies are done. In this study, we reanalyzed a large meta-analytic database of youth randomized control trials of psychotherapy interventions that my colleague John Weisz and his colleagues have created. And the innovation here is that we take advantage of the fact that these interventions have been done across the U.S. in communities that differ in their level of structural stigma – In this case stigma in relation to race. So, we geocode where the studies are done, link in a measure of structural stigma related to race. Here we operationalize that as community level norms and attitudes related to racial prejudice, and then we examine their association with intervention efficacy. So, here are the results on the Y axis is the effect sizes of these mental health interventions and on the X-axis is our measure of structural racism. So first you can see here at higher levels of structural racism, we see lower intervention effect sizes for majority Black samples, indicating that Black youth are significantly less likely to derive benefit from mental health interventions if they live in communities with high levels of structural racism. In contrast, we see no association in the non-stigmatized group so again documenting specificity of these findings just to the stigmatized group exposed to these structural forms of stigma. So, I’ll end there and acknowledge funding for this work. Thanks again for the invitation. I'll look forward to discussion during the Q&A.

CÉSAR: Thank you for the invitation to present this afternoon. I'm going to be presenting a little bit of the work that we started doing a couple years ago, trying to understand ‑‑ to better understand the influence of social media use as a form of digital technology on mental health outcomes among sexual and gender minorities. I am having issues with what I can see in my presentation, so it's in a different screen.

These are my disclosures.

Well, the whole reason why we're doing this is because we know of the mental health disparities that sexual and gender minority groups are exposed to in comparison to other groups. These are even greater among early adolescents, bisexual, transgender, and rural sexual minority individuals. This comes with a number of health consequences and economic burden. There are theories and models like the minority stress that explain these disparities. The majority of these models appeared before social media came into our lives, and we know the extent to which social media has changed the way we socialize, we build community, we build relationships with each other. So, we don't have a clear understanding of how social media might be influencing positive and negative outcomes among the general population, let alone among sexual and gender minorities and other minority groups. So these are just a couple of examples of some forms of interacting with social media, something we call active and passive views, meaning the degree with which one participates in social media activities, and problematic social media use, which is another name for a potential form of behavioral addiction that's ‑‑ it's currently under study. 

We found cross sectional but significant associations between these behaviors and one specific mental health outcome, depressive symptoms measured with the PHQ9. We found for example, that engaging more passively on social media might be associated with an increase in depressive symptoms versus a more active engagement could be associated or is associated with decreased depressive symptoms. Now, all of these cross‑sectional findings are currently still understudied and over the last 12 months or so, we started to have some longitudinal data that show a lot of mixed findings, because we usually tend to measure social media use by the quantity of usage, versus potentially the quality of engagement with social media. Focusing on how we interact with social media as opposed to just the amount of time we interact with it. So, we started looking at these questions related to sexual and gender minorities with some qualitative assessments. Back in 2018, we conducted national survey of 18 to 30 years old young adults, and we were able to collect some qualitative data with which we conducted a content analysis, and we found interesting differences between some specific forms of engagement with social media and experiences on social media between non‑sexual and gender minorities and sexual and gender minorities. As you can see in this table, most of the potentially negative ways of interacting or experiencing social media were significant among the sexual and gender minority respondents. Meaning that negative emotional contagion or experiencing real life repercussions of social media use were more frequently described among sexual and gender minority respondents. So given this preliminary evidence, we also assessed whether some of the specific behaviors and ways of interacting with social media were different comparing sexual and non‑sexual gender minority respondents using the same survey data from the previous study. And we did find significant differences in a number of social media related behaviors and social media related experiences that were significantly associated with the sexual and gender minority group. And again, a lot of these particular behaviors and experiences have been studied in the general population to be more closely associated with negative mental health outcomes such as depression.

So then our next step was to specifically take one of these behaviors, experiences, actually, which are the negative social media experiences, which we measure with questions such as experiencing some discrimination on social media, or experiencing ‑‑ basically ignored on social media, some of the questions we used. We wanted to see if that could potentially mediate the difference in depression scores comparing our sexual and gender minority respondents with the non‑sexual and gender minority respondents. And we use a generalized structural equation model to assess both the ‑‑

(Time que interruption)

CÉSAR: Okay. Both direct and indirect negative and social media experiences, and we did find that one unit increase in this experience were associated with almost .5 unit increase in depressive symptomology.
So with all of this evidence, we developed a conceptual model that we are currently studying with a ‑‑ with an online ‑‑ with a series of online in‑depth individual interviews with a national sample of sexual and gender minority adults and we plan to use these qualitative interviews to develop a national survey of sexual and gender minority young adults, and we are currently developing this longitudinal survey that we plan to conduct next year and it will have potentially up to four waves of data that we plan to use to assess longitudinal changes over time between social media behaviors and experiences and mental health outcomes among this population. And with that, I want to acknowledge my funders and pass to Dr. Janet Cummings. Thank you.

JANET: Hello, everyone. I'm Janet Cummings. I’m so pleased to be here today. it's really an honor and a pleasure to be here today. I'm going to be talking about racial and ethnic disparities and mental healthcare quality amongst children and adolescents. I’m a mental health services researcher and I study racial and ethnic disparities and mental healthcare access engagement quality among children and adolescents. Because there are interventions effective at treating mental health disorders among this age group, services research is an important piece of the puzzle to consider if we want to understand factors that contribute to mental health disparities over the life course. Much of my work has focused on Medicaid enrolled youth, the safety net system, and geographic access to care.
For common child and adolescent mental health disorders, mental health services may include psychotherapy and possibly the receipt of psychotropic meditation, but it's important to note that clinical guidelines for a number of mental health disorders state that psychotherapy is a first line treatment for children and that medication may be used in addition to these services in a treatment plan, but generally not alone. The IOM defines healthcare quality as the degree to which health services for individuals and populations increase the likelihood of desired outcomes and are consistent with current professional knowledge. In the case of psychotherapy, realized access or the receipt of any service and engagement in the middle defined as ongoing participation in services. These are very much part of overall quality of care for psychotherapy. So, for example, among youth with depressive disorders, clinical guidelines recommend four to six weeks of supportive therapy in uncomplicated cases, or six to eight weeks of other types of therapy such as CBT for the clinician to assess responsiveness to treatment. So, in other words, engagement is a necessary but not necessarily sufficient, condition for care quality.
Building on these concepts, I want to take us through three key findings from my work. First, access to and engagement in psychotherapy is poor for all youth. It's even worse for youth from racial and ethnic minority backgrounds compared to non‑Hispanic whites. In a recent study, I used Medicaid claims data from nine states to derive a cohort of youth with a new episode of major depression., Only 2/3 received any psychotherapy visit within the 12 weeks following diagnosis, and Black youth were significantly less likely than their white peers to receive any psychotherapy visit. The slides from the same study and the bars on the left here show the adjusted percentage of each racial and ethnic group that received minimally adequate psychotherapy. defined as receiving at least four visits in the first 12 weeks following diagnosis. So, this four‑visit threshold, this is really only telling us if the child received enough visits for the clinician to assess if the treatment is working. It's not a threshold for whether the child completed an entire course of therapy. So, with that in mind, take note that only .4 of non‑Hispanic white youth received at least four psychotherapy visits in the first 12 weeks and the percentage was significantly lower among Black and Hispanic youth. So, while enabling factors such as differences in health insurance status, socioeconomic status, differences in the availability of providers in the community, these can explain a small piece of the estimated disparities. But, in my work, the disparities often persist after we even adjust for these factors. So, other important constructs that likely account for some or all of the remaining disparities will include cultural preferences and beliefs, stigma, mistrust of providers and systems, bias, and racism. But in large insurance databases that I typically work with and large national surveys, these constructs are typically unmeasured.
A second key finding I want to highlight for my work, and I want to touch on it very briefly, is that racial and ethnic disparities and the receipt and continuation of psychotropic medication are even more pronounced than what we observed for psychotherapy. But again, because psychotherapy is typically a first line treatment for this age group, and because this is where I believe we have the potential to be bold and really make dramatic progress in reducing disparities. I'm going to spend the rest of the presentation following up on the findings related to psychotherapy.
The third key finding I want to highlight relates to the potential of school‑based mental health services to address a number of barriers related to enabling characteristics and logistics to improve engagement in psychotherapy for all youth and reduce disparities. So, take a look at the logistics on this slide of a child trying to receive psychotherapy in a traditional clinic‑based setting. These logistics are tough. You have four locations. Home, school, the caregiver's place of work, and the child's school. If the child has siblings or the family doesn't have reliable transportation, it gets even more challenging. And for Medicaid enrolled youth, an added barrier is going to be greater distance to a mental health provider that accepts Medicaid.
For psychotherapy, this is going to require at least eight to 12 visits on a weekly or biweekly basis.
Now, there is a model of care delivery that is growing around the country as we speak, and it addresses so many of these logistical barriers, where mental health clinics partner with schools and send the clinician to the school where the child is instead of having the child come to the clinic. Here are a couple of quotes from my qualitative work, including a quote from a caregiver and a provider that really explained, in their words, the potential of school‑based mental health services, which I invite you to review when the slides are posted. And while school‑based services have the potential to improve access to and engagement in psychotherapy for all youth, a couple of my studies have also shown that school‑based services may help reduce racial and ethnic disparities for some groups.
So using data from the National Survey of Drug Use and Health, we found that racial and ethnic disparities and the receipt of any counseling in a school setting were relatively less pronounced than the disparities and the receipt of mental health treatment in an outpatient clinic. And this was ‑‑ this study was conducted using an analytic sample of adolescents with major depression. So, on this slide, I wanted to make the point as to why I think we need more rigorous research on the potential of school mental health right now. There is so much happening in our federal and state policy arenas related to school mental health. So, in the southeast alone, all eight states have had policies passed or policies under consideration to expand school mental health in the past two years. And in six of these states, this included expanding the model of care where clinics partner with schools to deliver services on school grounds. And then some of these policies and actions support other pieces of school mental health, which have the potential to target other mechanisms that our panelists have spoken about earlier: stigma, racism, and I would be glad to provide more information about that in the Q&A. This policy environment is moving ahead at warp speed, which takes me to my suggested recommendation for future research.

Because major policies are being passed and substantial resources are being invested right now to advance school mental health, we need rigorous research to guide these policies and investment to make sure we maximize the potential of school mental health to improve access and engagement in mental health services for all youth and to eliminate racial and ethnic disparities. Thank you so much.

ALEX: Thank you very much to our four panelists for those great presentations. We're a little behind schedule, but I'm still confident we can have an interesting discussion here. One place I wanted to start, it's kind of the elephant in the room any time we're talking about disparities is COVID‑19. We know that it's impacted communities of color and the most recent data suggest it's even more pronounced for the LGBT community. So, I was hoping that each of you could tell us a little bit about some of the effects you're seeing of COVID‑19 on your areas of research.

APRIL: I'm happy to go first. In terms of thinking about disparities, I think an important ‑‑ with respect to COVID‑19, is that racial and ethnic minorities are suffering from the cytokine storm, more likely to have severe outcomes. The way I think about it is if we have these social disparities and also factors that may result in an increase in chronic health conditions, it's not too surprising why the COVID‑19 disparities are so prevalent. There's increase in chronic co‑morbid health conditions among racial ethnic minorities. But also, if we start to think about stress and chronic low‑grade inflammation that we know is happening, then that may put people at risk for the cytokine storm that we see with COVID.

MARK: I can say something really quickly. There's just really preliminary data now on how COVID is affecting LGBT populations. I think we need a lot more. Part of that speaks to the importance of including measures of gender identity on some of these data sets where we can derive more helpful information on prevalence and disproportionality of impact. Another really important question that remains to be seen is how these structural forms of stigma and discrimination intersect with that. So, for instance, do we see more pronounced disparities in areas with higher levels of stigma and discrimination. I think that's another important area where we need more information.

CRYSTAL: Alex, we have a question as well coming in. The question is how do we test that hypothesis about the cytokine storm in vulnerable populations with COVID?

APRIL: I think one way is to retrospectively ‑‑ I mean, my lab is trying to now recruit people who have tested positive for COVID, just to look at severity and outcomes- both psychiatric outcomes but also health outcomes. Also thinking about how COVID ‑‑ the entry is through the ACE 2 receptor. And this receptor is often implicated in hypertension and uncontrolled blood pressure. We know that African‑Americans have higher rates of hypertension and uncontrolled blood pressure. So, I think there's these mechanisms that could be retrospectively tested if we are able to get those populations who have had outcomes to be able to document and track that. That might be one way.

ALEX: Before the question came in, Dr. Escobar, it looked like you were leaning over as if you were ready to say something.

CÉSAR: Yes, I wanted to share a little bit of the data that we've been collecting during our interviews, coincided with the months of April through May of this year. We were actually collecting data from interviews, online interviews with sexual and gender minority youth who live in rural areas. It was striking to hear from them how the pandemic increased their ‑‑ the social isolation they usually have to deal with because of the lack of supportive resources for sexual and gender minority youth who are in the process of figuring out their sexual orientation or gender identity or both in rural areas. This lack of community resources not only is at their family or church level, but also at school level in these rural communities. And they express this urgent need of finding these resources. We of course, because of the work we do, we are thinking about some social media delivered interventions that we are in the process of developing right now, but what Janet was presenting minutes ago got me thinking about what we've heard from this youth regarding their experience with social isolation during the pandemics as well.

JANET: I have a couple of thoughts as to how the pandemic relates to child and adolescent mental health services research. The school is playing such an essential role right now for our children in children's mental health. I mean, schools are really at the center of what's happening now. And the needs are greater, and the needs are greater at a time when resources from the Department of Education are becoming more and more constrained because of all of the challenges they are having to navigate. But at the same time, there is ‑‑ there are ‑‑ I'm seeing kind of shared values among leaders about the importance of school mental health, the opportunity to advance mental health, and also attention to things like cultural humility and disparities, disparities in mental health outcomes, disparities in disproportionality. I think it really is an opportunity for mental health to partner with education and think about tackling some of these problems together. There's never been a greater time to really answer the question and start rigorously looking at what pieces, what components of school mental health, what interventions make the most headway to improve mental health services for all youth and reduce disparities. The other piece I'll touch on briefly is the overnight shift to telehealth also has incredible implications for children. We don't have enough research on what engagement looks like for telehealth for children. What kind of disparities may we see with telehealth? So, we're also going to need research there about the intersection of how telehealth fits in with school mental health when we have so many different models of education right now, in person, hybrid, or exclusively virtual learning.

ALEX: Both in and out of the school, telehealth does present an interesting opportunity and problem when we're talking about disparities because it seems like it may create new issues as compared to the disparities we see for in‑person care. So perhaps we could talk for a few minutes about what those disparities may look like, too.

JANET: I'd have to say that, honestly, this is where we need more work. You're right. I'm thinking about South Georgia and some of the communities that were hit really, really hard by the COVID pandemic. And had to go exclusively to virtual learning, all telehealth, and leaders in that region talked about how there were major issues with broadband coverage in the region. So, in underserved communities, just even basic challenges, that infrastructure piece of broadband access, that could present a new challenge. So that's one example. I think there will be the structural pieces. I think we're going to need to look at what are ‑‑ are there cultural preferences across racial and ethnic groups about, you know, whether connecting with services ‑‑ and especially for kids, right? I mean, that's challenging as well. So, for younger kids, there's going to be more of a dependence of the parent to be involved and facilitate telehealth, whereas for adolescents, they may be a little bit more independent. But what does that look like across racial and ethnic groups in terms of preferences for services. There are so many important questions there we need to dive into.

ALEX: Something else I think worth bringing up is both during and before the pandemic, problems like stigma and structure and racism, discrimination, a lot of that flowed through social media. All of your topics…These topics really meshed together. So, I was hoping we could hear a little bit about how social media may contribute to problems with stigma now that we have a little bit more space with our remaining discussion time.

CÉSAR: A lot of the things that we've heard over this year from our study participants in this process of developing this national survey for next year was related to the opportunities that definitely for the finding social media for sexual and gender minority youth and emerging adults. But, the negative experiences and how discrimination and stigmatization of this particular population expands on social media. Given the affordances of social media, like, for example, the permanence of ‑‑ which is basically something is posted and it stays there not for a minute, but sometimes for days and weeks with people ‑‑ individuals keep adding comments that might be seen by this sexual and gender minority youth in developing. So, we need to, in the future, I think, think about also more systemic ways of potentially intervening in social media interactions. Of course, these individual and family‑based interventions that a lot of people like ourselves are thinking to conduct on social media are valuable, but even from these study participants, we heard things like, it would be good to have a notification popping up on the screen of that individual who posted something hateful, or something discriminatory. Not just to teach me basically how to deal with it, but also having this sort of just-in-time they call it interventions that will pop up maybe on both ends, on the end of the person who is witnessing this discrimination on social media, but also on the screen of the perpetrator, if you will. So, these are sort of open paths for intervention in the near future on these particular ways of interacting on social media.

MARK: I think another thing to say about social media too is from a measurement perspective of how to measure stigma and discrimination at structural levels. I think that there's widespread acknowledgement that stigma exist at these levels. I think where the field is moving in part is developing reliable and valid measures.
And one way ‑‑ there's some line of work now in kind of leveraging big data, and one way to do that is through social media. And so when you aggregate, for instance, Twitter feeds with language that is promulgating stigma or prejudice to an area level and link that to health data sets is one way to think about how to capture norms and attitudes in an area that aren't reliant on self‑report.
So, I think that there are ways of leveraging the new types of data that we have through social media and other platforms and other domains to think about advancing our measurement of stigma and discrimination at the contextual level of analysis.

CRYSTAL: We did have a question ‑‑ oh, I'm sorry, Dr. Cummings. Just very quickly ‑‑ go ahead.

JANET: Sorry, I was just going to add very quickly that as part of school mental health, many schools are implementing programs to address school climate, and I think that could raise interesting questions about schools working to create a more positive, more inclusive environment, does that have an effect on the social media behavior of the children and adolescents in the school. And potentially reduce stigmatizing and discriminating behaviors on social media among those students.

CRYSTAL: Great. Alex, we did have a question come in through email for Dr. Hatzenbuehler. They wanted to specify the tools and thinking about measurements that you used to measure community level norms for racism.

MARK: I'm sorry, I missed what you said at the beginning about the question.

CRYSTAL: Yeah. It was a question for you about the tools used to measure community level norms for racism.

MARK: Sure, yeah. So, there are kind of two major ways that researchers have measured norms and attitudes, by aggregating individual level norms up to the area level. One of those is to use measures of explicit norms and attitudes related to race and other stigmatized groups. There's work on this in the area of mental illness and sexual orientation and other areas. There are data sources that people have used, typically either nationally representative data sets like the General Social Survey or the American National Election Survey, the ANES. That query people's responses about ‑‑ or attitudes about these different groups and then you can create from those data sources, you can aggregate to the level of your ‑‑ where your study is. So, for instance, if you know the counties where your respondents live, you can utilize those data sources to create measures at the county level. There are advantages that approach the main limitation, of course, social desirability bias. So, people going to reliably report their attitudes toward particular groups. So, a second measurement approach is to use more implicit or non‑self‑reported data. So, one of those approaches has been to use data from the project implicit data set, which is what we used. So that has measures both of implicit measures, tip think through the IAT. And also, implicit attitudes that are assessed as well. And another kind of non‑self‑reported data source that people have used are Google Search terms for different stigmatized groups. There are a variety of different data sources that people use that are all publicly available and can be downloaded at the geographic unit of analysis that you have access to in your study. While I'm answering this question, just as I think a really important direction for future work that prevents some of this work being done is that a lot of the current existing data sets that have good indicators of mental health don't provide geographic indicators or make it very challenging for researchers to access that. And so, I think one of the reasons we often do work at the individual level of analysis is that we're constrained by being able to look at these contextual features because the data sources don't provide that information. So, I think addressing some of those barriers, and I think NIH could potentially have an important role to play here in facilitating those ‑‑ the reduction of those barriers, I think would really go a long way to advancing this work and facilitating people being able to do this type of work at the more contextual or structural level.

ALEX: And in our last couple of minutes, I'm told we have one more question from email. And why don't we wrap up with that last question.

CRYSTAL: Yes. We have one more question for Dr. Thames. Have there been studies of the effectiveness of directly treating the information caused by chronic adversity? So, changing attitudes and stigma is a long process that needs to happen. The person is also wondering if there may be a more rapid way of minimizing the negative effects over time.

APRIL: I am aware of studies that have looked at using anti‑inflammatory agents and how that might have effects on health outcomes, but not directly related to chronic stress or adversity. So that's an interesting question. I personally am not aware of the literature. But I think that that is ‑‑ you know, could potentially be a promising target. But I think one thing to keep in mind is that even though these discriminatory experiences, they happen periodically. But there is the threat of that potential discrimination occurring that is in the long term the most potentially damaging. So, I don't know if someone were to try to do a study where let's say they implement some sort of anti‑inflammatory agent. Is that going to be effective for a phenomenon that, when it occurs, it's obviously emotionally disrupting. But there's also this threat in the air, if you will, of when could this potentially happen again. So, one thing I think NIMH in particular has a huge opportunity with the goal of studying how the brain actually responds to discriminatory experiences and to think about, okay, in relation to reducing inflammation levels, but if the we can somehow think about what are the mechanisms by which the brain is responding differently among people who are historically discriminated against or marginalized. Are there ways to alter, if you will, the neural response. And that may ‑‑ if you can stop the sympathetic nervous system from chronically becoming activated, that might be one mechanism to reduce the inflammation or even changes within the immune systems. And there have been some studies looking at reducing or coming up with interventions for social isolation, for example, that have actually made alterations in the conserved transcriptional response. So, in effect, what everybody's been saying here, kind of taking a structural approach of an intervention, has actually been found to be effective at the cellular level. So, I would say in relation to adversity or trauma or discrimination, we need to have a better characterization about how the brain responds in both natural contexts, when the event occurs, and then after intervention.

MARK: If I could just jump in really quickly to piggyback on what April was saying. I think I sort of had to race through that last study that I presented, but I think that one of the important things you're pointing to is that the social context in which these interventions are conducted and disseminated can moderate their efficacy.
So, you can have an anti‑inflammatory intervention or a CBT intervention to reduce the sympathetic response. But if that's done in an intervention that's not changing the social context around the individual and you’re putting them back out into the environment, the threat is still in the air and may reset these basic biological and psychological processes to harmful levels, which is what our data are suggesting. That these interventions really flourish in some social contexts but fail in others. Even when we want to focus at the individual level, we have to think about the contexts in which those interventions are being delivered.

ALEX: Great. Thank you very much, Dr. April Thames, Marc Hatzenbuehler, César Escobar-Viera, and Janet Cummings. We appreciated hearing from your in our first session. That brings us to our time. And I will pass it over to my colleague Eve Reider for panel number 2.

EVE: Okay, great. Oh, here we go. Great. Greetings. My name is Eve Reider. I'm the Associate Director for Prevention Research at NIMH. I want to thank Crystal, Denise, and Jennifer for including me in this very important and most informative meeting. This panel is on preventive and treatment interventions addressing disparities and disparities populations. We have four speakers. And I apologize if I say anybody's name wrong. Please correct me when you present. Kiara Alvarez, Massachusetts General Hospital. Sannisha Dale, University of Miami. Jessica Goodkind, University of New Mexico. And Jeremy Goldbach, University of Southern California. I want to remind you bios are available on the workshop website virtualdisparitiesworkshop.com. Each presentation will be about seven minutes. Questions will be answered during the roundtable discussion. And questions can be emailed at any time to disparitiesworkshop@mail.NIH.gov. So, we're going to start with Kiara. Thank you.

KIARA: Thank you. Hello. I'm Kiara Alvarez. I'll be presenting today on the development of a preventative intervention for suicide risk among immigrant‑origin youth. No conflicts of interest to disclose. I want to acknowledge the funding both for my study that I'll be presenting here as well as several secondary data analyses I’ll be talking about.
My focus today is on family‑based prevention and there is very good reason to focus on this in preventing suicidal behavior. Starting with epidemiologic studies on risk and protective factors that very frequently have found family conflict as a source of increased risk as well as parent/child communication and connectedness to parents as protective factors. We also know from reviews of efficacious interventions for suicidal behavior that they all include the family in some form, even if they are focused primarily on individual youth. And we also know from a special issue led by Dr. Reider and Sims several years ago that family‑based preventive interventions that are delivered upstream before the onset of suicidal behavior can have long‑term impacts on preventing later ideation and attempts.
When looking at immigrant families specifically, there are cultural and structural considerations that we should consider that the experiences of immigrants across cultural and linguistic groups. Some of these include intergenerational cultural conflict which is a risk factor for suicidal behavior in studies of Latinx and Asian youth and has often been addressed in substance use prevention, but not necessarily in suicide prevention and the earlier upstream phases. We also know that language can be a major challenge in families that are multilingual and different family members may have different levels of language proficiency in English and other languages which can create barriers to communication, and we also know structurally there's a lack of bilingual therapists and interpreter services to meet their mental health service needs.
And so in this regard, my K23 study focuses on developing a preventive intervention through an intervention development process and I'll be presenting on these three initial components today, including from synthesis of evidence‑based practice elements through incorporating secondary data analysis in focus groups and the later phases, which are in progress now are about testing the intervention.
Beginning with evidence synthesis, beginning at the earlier stages of the study, we synthesized evidence from family therapy and resilience models, from suicide prevention and from immigrant youth mental health, which are sometimes overlapping, but often distinct literatures, and selected these intervention targets: safety planning, family conflict, intergenerational cultural conflict, as mentioned, meaning conflicts that can arise for adolescents and their parents for acculturating at different rates and ways to US culture, and parent/child communication. And really approaching this as a brief collaborative family therapy approach with adolescent that were reporting suicidal ideation but had not moved on to attempts. This was complemented by secondary analyses, which included two NIH‑funded longitudinal studies of youth. Both in the early 2000s up through the present day, in the case of the Boricua youth study, looking at youth in Houston was one study, and the other study is Puerto Rican youth in the south Bronx and in Puerto Rico. These were both studies that followed youth from childhood or early adolescents up through young adulthood.

I won't have time to go into all the specifics of our analyses, but I think briefly I would just say that while we did confirm risk factors and protective factors at the family level, including with associated with risk later in young adulthood, we also found very much the impact of ecological stressors and adversities from school to neighborhoods to economic stress being associated with suicide attempts, although the associations did vary in the short and long‑term analyses. We also conducted a chart review, which focused on a very population very much exposed to trauma, which is unaccompanied immigrant minors who arrived in the US alone without family members. They were being seen for school‑based mental health services at this point and had often been reunited with family members. We found on the very acute population, particularly for being seen in the school context, half of them reporting sleep problems, almost half reporting past suicidal ideation and attempts. Trauma reported just in the initial evaluation by almost all participants and nearly 3/4 describing prolonged period of living apart from their parents during childhood. So, these youth describe family as a source of conflict and a very important source of support. This highlighted for us the importance of addressing these impairing symptoms of involving families but also knowing we wouldn't be addressing the adverse social context and discrimination.
And finally, looking at focus group data, this was a collaboration with several investigators at Johns Hopkins and we conducted groups in Boston and Baltimore with immigrant parents and adolescents. And finding, you know, we have larger findings from this study, but related to the intervention, an important finding is that many of the themes they raised were consistent with targets, so both groups were very focused on parent/child communication, for example as a potential risk or protective factor.
But parents and youth had different perspectives on how or why these might be challenges in a family, and so it really evidenced the importance of bringing family members together to be able to work on these challenges and to build upon family strengths. And again, risk factors in the broader context, including financial stressors and documentation status, were described as impacting family stress and processes.
That brings us to the study's conceptual model, which is really about building family resilience. Again, in a family systems intervention, caregivers and child together, for all sessions, through a communication improvement and conflict reduction, with the goal that this would lead downstream to increase social support for both parents and youth to increases in coping skills and in self‑regulation. And ideally to reduced ideation long‑term. And this is really embedded in narrative context that also incorporates cognitive behavioral principles, and so with a core of safety planning, as well as practicing skills, in vivo as a family and honoring the rituals and routines of the family and the migration journey that has brought them from the past into the present moment as well as going forward into the future.
Next steps for us are really focused now on adapting to the COVID‑19 context. And so really moving into a context where we've had to adapt the trial to actually be conducted via telehealth. And through a lot of discussion and continuing to work with families on questions really arising about how this could increase equity and access, because families had really been concerned about time and transportation barriers. But could also, as I think has been mentioned frequently today, worsen disparities depending on technology and Internet access.
Future directions also include the potential for piloting some of these intervention components to be delivered by community health workers and parent peers as a way of moving further upstream into community settings, moving to stepped care approaches, and considering the fit for immigrant families from other cultures.
Thank you, and these are the members of my research team as well as mentors. And I will pass over to Dr. Dale.

SANNISHA: Hi, everyone. Thank you for having me. My name is Sannisha Dale, and I'll be speaking about addressing disparities and equities faced by Black individuals at the intersection of HIV and mental health.
I'm a professor at the University of Miami. I’m also the Director of the SHINE Research Program that I found and the Director of the Mental Health Disparities Core for CHARM Center. This is an image of my lab, and just some bullet points and what we do. We do a lot of work that has to do with engaging community, but also thinking about innovation as we seek to really enhance resilience, addressing trauma, and health outcomes amongst individuals both at risk and living with HIV.
We investigate psychosocial and structural factors such as discrimination and poverty and we focus on both monitoring these issues, but also developing effective intervention, and everything that we do is really underpinned by community engagement and having positive relationships. As you can see based on the image of my lab, we tend to attract a lot of individuals who are not only interested in the topic but have a lot of lived experience from different angles. This is some of the aims and overview for an R56 grant that's currently ongoing and funded by NIMH. And it's focused on monitoring microaggressions and adversities in order to inform interventions for Black men living with HIV. And we monitor microaggressions across time for ‑ currently we have enrolled 150 Black women living with HIV within Miami. We monitor microaggression by actually sending a daily text message. So, we get day by day data on whether or not women have experienced a microaggression and also the distress affiliated with that.
We are also looking at in addition to the microaggressions that might occur daily, we're looking at more macro experiences of racial discrimination and we're assessing these every three months in addition to reoccurring violence that women might experience. We're looking at the relationship between these micro, macro, and reoccurring violence experiences with viral suppression and HIV. But we're looking at it as mediated by the relationship of mental health and health behaviors in the middle. In addition to that, a third aim is really to look at how resilience might moderate that pathway that we see, and we're looking at resilience at both the individual level, so what are some traits that individuals might have, but also the interpersonal levels, such as social support. And also, at the neighborhood level. So, we're also gathering neighborhood level data on resilience factors utilizing census track to really look at the moderation of this pathway.

One thing to note about this study began last fall and we've already started to see some very interesting findings based on what's going on socially based on COVID and also what has happened in terms of the Black Lives Matter movement following the death of George Floyd. So, we saw a really rapid increase in the distress associated with microaggressions right after the COVID hit in March, and we also saw that peak again after the death of George Floyd.

We're also collecting data on COVID in terms of how it's impacting the women who are engaged within this study. And so, we got this university funded study to really kind of do both qualitative and quantitative work to see how the experience of COVID is impacting the women and their concerns. And also to assess for other issues that might arise as a factor of COVID. What we found thus far qualitatively, and we’re currently writing up that manuscript, is that there's both evidence of adversity and also resilience among the women in terms of their ability to really maintain adherence to their medication, to take care of themselves, and to somehow find meaning in the midst of chaos. Quantitatively, we're seeing there are high levels of distress that we see, high levels of death and loss, so understanding the impact of COVID‑19 amongst the Black community, a lot of the women are reporting that they've lost individuals. We've also had participants who have unfortunately also died within the context of COVID and as a result of COVID.
Another project that we currently have going on within the lab is really called the five‑point initiative and this model was developed within the context of community and actually inspired by my experience with community. We had a one‑point grant funded by the ETHA initiative through NIMH, a planning grant, and we started doing this work in Miami. It's called the five‑point initiative because we tend to approach and partner with five types of businesses. So, we partner with laundromats, small grocery stores, we partner with car‑related places, so car washes, car mechanics. We also partner with hair salon and beauty and also barbershops. We also have five key voices that are at the table. So, we have researchers, you know, the lab, but also, we have community consultants. So, we have a team of paid community consultants that help us to inform this and also branch a relationship with another key voice, which is community businesses. So, we partner with these community businesses and what happens in an event or in an outreach event is that we partner with a business, we go and set up for about four to five hours, and we get there and we then engage their customers and people who are passing by with HIV testing information around PrEP, condom use, etc. And what they get in exchange for engaging with us is they get a voucher to spend immediately in the business. So, what ends up happening is that everyone in the partnership is being rewarded. We also have community health organization to come and do the testing, and they also are rewarded by the fact that there's already a pre‑created infrastructure for them to conduct testing and get their numbers up.
Thus far, this has been highly acceptable within the community. We've had a lot of businesses approach us, once they’ve heard about it, a lot of community members who are highly satisfied by it and also the community health organizations. So, this is work that's ongoing by now two‑year funded implementation science award through am ETHA supplement.
Another project that we have going on is called WAVE‑TW - Writing to Alleviate Violence Exposure for Transgender Women. This is done in close partnership with the empower you community health center. And we're really conducting both qualitative information to really get a sense from community stakeholders and women living with HIV who in terms of what is needed and what would be feasible and acceptable for a trauma in an integrated intervention. As you can imagine, COVID impacts everything, but we're pushing along great. The next aim would be to look at an open pilot of an intervention that's been informed by the stakeholders and the participants.

STEP‑AD is a study was funded by any K23 through NIMH a few years ago and it's now wrapped up. But we've had a couple of phases. We first had the qualitative phase that really spoke to Black women living with HIV to get their experiences around trauma, racial discrimination, HIV -related discrimination, gender roles, stressors. So, you can see there's a theme of intersectionality that really flows throughout the work that we do. A large focus on self‑care and problem-solving techniques around medication adherence. And the interview showed that women found this again to be very acceptable. There was a sense of kind of relief in that here comes an intervention that's speaking to my whole experience and many of the things that I experience as a Black woman living with HIV. We also have the open pilot trial where five women went through the intervention for STEP‑AD which is an intervention focusing on the components noted above, and that showed preliminary acceptability and feasibility, and we have recently wrapped up the pilot RCT and are in the process of submitting that work for publication. But, again, evidence of acceptability and feasibility. So, the next step for this would be an R01.

Another study that we've conducted is MI‑PrEP, and it's focused on utilizing motivational interviewing to engage Black women around PrEP. We did an open pilot and a pilot RCT, and what we found from the qualitative phase and also the open pilot is that women are excited to learn about PrEP, but one of the issues is that individuals and attempts that aren't being made to reach women appropriately. The other thing we found was once women became interested in PrEP through our intervention, they found a lot of barriers at the facilities that are supposed to be providing PrEP.
And that is it, this is an acknowledgement that shows not just an image of my team. They really are carrying a lot of weight and we also have new members. But also, to acknowledge the participants who consistently give their lives and their experiences to teach us about how to better serve them, also the community consultants and stake holders. Also, to the funding agencies, NIMH, NIH overall. Thank you very much, everyone.

JESSICA: Hi, good afternoon, everyone. I'm Jessica Goodkind. It's really a pleasure to be here today. With all of my colleagues doing such important research. I'm going to share with you a little bit about the refugee and immigrant well‑being project studies, which are a partnership between the University of New Mexico and our community partners, the New Mexico Immigrant Law Center, the New Mexico Dream Team, and Encuentro, and Centro Savila. I'm going to share with you a concept that we have developed called trans‑level interventions and how we feel like this approach is a way to bridge prevention and treatment efforts and to create sustainable social change to improve mental health.
I want to acknowledge our community and university research team members; you can see some of our team members here from both the refugee and immigrant well‑being projects. As well as our funders, the National Institute on Minority Health Disparities which has funded this work both through separate grants and as a core research project of the University of New Mexico transdisciplinary research equity and engagement center for advancing behavioral health or the UNMTREE Center. Also acknowledge our research participants and students who have been involved in these studies.
So, we've heard several speakers talk today about multilevel health interventions and we know that this represents an important advancement in reducing mental health disparities. But I wanted the point out that often multilevel change efforts, and again, many of our speakers talked about this today. They still focus on impacting individual behaviors rather than changing social structures to impact underlying social determinants of mental health. And often, this ends up blaming individuals for the mental health conditions or health disparities that they're experiencing that have these underlying root causes. The other issue with many multilevel health interventions is that although they may be addressing change at multiple levels at the same time, they don't necessarily involve the same people in those change efforts.
So, our response is the concept of trans‑level health interventions, which we see as kind of analogous to the move from multi‑disciplinary teams to transdisciplinary teams where there's really engagement across disciplines or engagement across levels of change. So, the first principle that we believe is important is that structural change has to be one of the emphasis, that we need to address the root causes of mental health disparities and to do this requires really community engaged or community‑based participatory research with partner organizations so that we can achieve change at multiple levels, including in policy and practices.
The second principle of trans‑level health interventions is to involve participants who are experiencing the mental health challenges or disparities as change agents, and part of this means creating the preconditions for their meaningful participation. So, this means addressing people's immediate stressors like housing, income, healthcare, as well as providing support so that people can meaningfully participate in the intervention. So, things like transportation, childcare, and food. And then really consider the context and structure of interventions and participant attributes to find the right match between those, so that people can get involved.
And you can see a quote here from a participant who was able as part of the project to go talk to her state representative and have some meaningful changes in her community around lights that were missing that was impacting their safety and mental health.
The third principle is strength‑based. So, we know that people experiencing mental health disparities are survivors and that they ‑‑ they're excerpts on their mental health and well‑being, and it's imperative to build on their expertise and strengths and interventions.
The fourth principle is really designed to dismantle the unequal healthy relationships that are a part of so many mental health interventions, but which we see as often detrimental to people's mental health and to engage people together as co‑learners and agents of change and learning from each other to improve their lives.
So, in the brief time that I have left, I'm going to share with you how we do this in the refugee and immigrant well‑being projects. With our overall aim of both preventing and reducing the high rates of psychological distress among refugees and immigrants who are called newcomers here. By improving their access to resources, creating opportunities for mutual learning, increasing valued social roles and social support so that newcomers can be empowered and integrated in their communities and fundamentally so that we can make our communities more responsive to the needs of newcomers. And newcomers who come to the United States have usually overcome tremendous adversities. And so, we really need to build on their resourcefulness and coping strategies and other strengths both internal and external that they have.
We do this by bringing together newcomers and university students who worked together for six months. Students enroll in a two‑semester class and they earn course credit. They're in the classroom for three months. And then they start working together with families in learning circles and advocacy. Learning circles meet once a week and they bring together students and newcomers to learn from each other, whatever they want to learn, what newcomers want to learn about life in the United States and what they want to share and teach students about their lives and experience. Learning circles also involve one‑on‑one learning opportunities where newcomers direct their learning around learning English, job applications, whatever they want to focus on. And then as newcomers and students get to know each other, they are officially paired together and spend at least three to five hours each week together to mobilize community resources and engage in change at multiple levels based on the goals of each family. We completed a randomized control trial of this model in 2018 with 290 refugees from Afghanistan, Iraq, Syria, and the great lakes region of Africa. We found significant increases in protective factors and significant decrease emotional distress among intervention participants from all three regions. The other really important point I want to make about this intervention is that it's a universal, community‑based nonstigmatizing approach. So we invited refugees from these three regions of the world in our community who resettled in the past three years to participate and 89% of all refugee households agreed to participate in the study and we had 100% retention of households in the intervention over the six‑month time period.
The other really important thing about this is it's an intervention that bringing to and works with people from multiple nationality, cultural, racial, ethnic, and linguistic groups all at the same time. We had to mobilize to address the COVID‑19 pandemic and ‑‑ sorry. And to do that, we recognized that the COVID‑19 pandemic can be retraumatizing for newcomers because of their past experience, but also often build on the strengths that they have the overcome adversities. But also, for refugees and immigrants, it's really exacerbated family separation because of reduced movement and mobility. So, we've been able to move our approach all online. The course, the learning circles, the advocacy, interviews and partner with local and state government and other organizations to build community and share information and resources. I wish I had more time to talk about this, but even today, we just had our first learning circles of the semester last week and a student this class in class talked about the community she felt we were already building among refugees and students and how important it is.
Sorry I don't have time to share some quotes from participants, but I wanted to end by saying that it's imperative that to reduce mental health disparities that we create change not only in intervention participants, but also in researchers, in community organizations, in students who are future leaders, and structural conditions as a whole. We believe this trans‑level approach is one way to do this. Thank you very much.


JEREMY: Hi. I want to say thank you for having me today to share a little bit about some of the work we've been doing. My name is Jeremy Goldbach, I’m an Associate Professor at the University of California. My training is in social work. My background is in clinical work and largely in community organizing. Some of the work that I've been doing in interventions I think really relies heavily on my own clinical and practice background.
I'm going to talk for a few minutes, I guess exactly five to seven minutes on preventing behavioral disparities among sexual gender and minority youth‑‑ so my disclosure slide up here. This is I think how my kids think research looks in our lab at USD. And I’ll just mention again, my apologies in advance that I have about five minutes and can be a little prone to longwindedness. So, because of that, rather than take this time with you to describe any specific studies that I'm working on, I thought I would focus on just a few key takeaways that I'm contending with at least in my own research. In my attempts to build and test and look for efficacy and interventions for helping to reduce health disparities for sexual and gender minority kids.
So, the three points I'm going to briefly touch on are around health disparities not operating in a vacuum. I think we’ve heard a lot about this today, but for those interested in developing and testing interventions, I think this is really key.
The second is around following the rules, but not always following the rules, because your instinct, your personal experience, and the experience of your participants in particular become really important.
The third point I want to mention is around people being resilient. For those that recently read the Georgetown Public Policy review about eugenics and the ethics, a statistical analysis, I think this becomes a really key point in thinking about how we understand minority health, resiliency and what lends itself to health disparities.
The first point I want to make briefly is around health disparities not operating in a vacuum. So, some of you may be familiar, The World Health Organization recently came out with their framework for understanding health disparities through the context of social determinants. And I really love that Dr. Alvidrez, earlier mentioned that this sort of framework that many folks were taught in school. That we don't focus on that because we're psychologists. That's sort of case management. I sort of chuckled to myself, because as a social worker and a person trained in the science of social work, largely the idea of case management and comprehensive assessment, biopsychosocial understanding, understanding the context and environment is really like front and center in social work. 

I feel like this is really a nice space for us to be operating in. And for those that maybe feel less comfortable in these spaces, I say maybe reach out and find a social worker to help you with this. I'm sure what I'm presenting here is not unknown to many of you. But I think it is messy. I think there are reasons why we have largely avoided going down this road, because we operate in science, in trying to move towards a largely positivist approach. When we start to think about people as and complicated and complex and multi‑systemic and multi‑ethnic, and intersecting identities, it makes things a lot more complicated. We know that these things work push and pull in systems that create the individual in a really complex way. And so, I think these frameworks are becoming really, really helpful for those looking to do this kind of work, because they help us to operationalize and think about the various components that we might want to look at in our interventions.

The second thing I want to touch on really quickly is there is value in following the rules. You can tell my characters here are clearly the NIH because they look very serious. But they have done a lot of work over the years to come up with different models of thinking about intervention development, right? So, you know we have these stage models, and there's a lot of value in using the frameworks that exist. One thing I want to warn, I guess, or mention here, though, is that I think sometimes we tend to take interventions or frameworks that exist and want to adapt them to the new population. I think if we came from a framework that a lot of this is based in eugenics and health disparities have emerged through historical trauma and other things over time. That really does invite us to be critical and really think through how these models should be applied to health disparities populations. So, I think one piece I'll mention is that stage one becomes a critical aspect in thinking about developing interventions. This is really the stage where we're generating or we're looking at measurement. We're looking at content. We're working very closely with the populations. It's largely qualitative or mixed methods. And we're spending a lot of time in community, thinking through how are the interventions that we're working with actually going to operate. So, the rules are good, right? The frameworks are really good. But, we want to be really mindful how we're applying these concepts of adaptation versus development of new interventions. And some of the work that we've been doing has largely to do with the frameworks that exist are not that great.

So, I also want to mention why that stage becomes so important. You know, following your instincts becomes equally relevant. I think our instincts may be driven in our own personal experiences in life and professional experiences. But also, largely what participants are telling us. And how we align our understanding of what the intervention should look like with what our participants are telling us. A lot of times, what we'll find I think these existing frameworks, they don't actually work that great for young people. So, in the example of the work that we've been doing, we've had to really look long and hard at multi‑systems interventions, thinking about, you know, what does it look like to have supportive parents. We spend a lot of time in the LGBT literature talking about parents as enemies, teachers as enemies, or people that are not particularly invested in health. And what young people have told us in our studies and in our attempts towards moving towards intervention development is that actually there are examples of parents and schools and systems and friends, in particular peer allies, that have played really meaningful roles in changing the social context, both for the individual, but also the structural context around social norms in school environments.
And so, the intervention work that we have going on right now is actually largely looking at both that individual level, but also in identifying, understanding how young people can identify safe and supportive adults, administrators, teachers, and parents. And very heavily working with peer allies through popular opinion leader models to say, how do we think about allies from an operational sense. I think we live in a world where a lot of people want to claim ally status, but if we think of being an ally as a verb, we really need to think about how we operationalize that. I think research plays a role in thinking about that. We have models out there thinking about popular opinion leaders and other ways that we can get people to participate in changing social norms and in schools and particular in communities. And they work. I think there is the other thing we're learning as we ‑‑ in the work that we're doing, in my very brief time, I'm just showing one example. So, we have a multi‑domain measure of minority stress that looks at sexual and gender minority stress and found change in improvement in our intervention groups and the small RCT that we did with NIMHD funding, finding improvement in minority stress for SGM kids in the intervention as compared to the control. One really interesting thing about this is that we are also ‑‑ this measure measures not only kind of the internal or intrapersonal and interpersonal stressors, but also perceptions of community norms, social norms, and we are able to see that. We engage allies when we look towards changing social norms through these peer allies. We do see improvements. It's really encouraging. So, I leave it there as my last point before I let us get back to the panel. Thanks.

EVE: Thank you all. That was super. Very, very interesting presentation. Now we're going to transition to the Roundtable Discussion. So, let's start out with seeing if panel members have questions for each other. Any questions for each other? Going, going, gone. Okay. Let's see if there's any questions that have been received by email that the workshop co-chairs will share with us.

DENISE: Okay. This is Denise. There are three entries here. This is a general question to all panelists. A great deal of data is collected by different state departments, although these data end up being in noncommunicating data sets, preventing longitudinal or multi‑level research on public health. Could the panelists comment on what they know about national efforts at integrating administrative data sets within states or nationally?

KIARA: I can comment. It's not my area, the kind of state level and administrative data sets. But in terms of trying to draw from that to inform intervention work, I think there are a number of challenges, particularly for disparities, because we don't have good data generally on race and ethnicity. I know that's something that's been seen with the COVID disparities, that if the data doesn't exist, to be able to analyze it. I think what was mentioned earlier by Dr. Hatzenbuehler about not having mental health indicators that are tied to county level, or even more minute at the census blocker level is a major challenge that we face as well. In the category of working on immigrant disparities and refugee disparities, there’s a lot of reason not to captured information at the state level. But it also prevents us from really seeing more of the diversity in who is receiving what services.

SANNISHA: I'll add a little to that. I was part of a workshop that was actually put on by NIMH by the Division of AIDS Research this summer on intersectional stigma and discrimination. It was actually in the work group where we were talking about the need to better monitor and integrate different data sets. But a big part of the issue even goes back to the questions that need to be within these data sets, because you're question in what you're able to conclude is only as good as what's there. Oftentimes, take racism, the caveat is to measure race. Race is not racism. So, there are a lot of issues with the existing data sets as is. Another issue you'll see a lot is when it comes to gender identity. You’ll see markers of sex but not around gender. So, there's a lot of ways in which these big data sets need to be collected better for us to be able to integrate and answer big questions that would move the field forward in a meaningful way.

DENISE: Okay. I have two questions specific ‑‑ one is for Sannisha Dale. Can you elaborate on the neighborhood level data that you are collecting on microaggressions?

SANNISHA: Okay. I thought Jeremy had his hand up. I think he wanted to finish a thought. Go ahead Jeremy and then I’ll answer.

JEREMY: I just wanted to tag on to what you were saying, Dr. Dale. And I think that that's a really critical point that, you know, we use these proxies, and these are really problematic in the way that we are thinking about health disparities. Because they continue to promote a eugenic argument for how we think about problems in populations or challenges they have. Because it leads us to the argument that if you are a person of color or you are gay or lesbian, that that means that you have more anxiety, and it is somehow related to your race or gender or sexual identity. And until we correct that really, really critical challenge that Dr. Dale just said, we are going to continue to perpetuate a system that leads one easily, if they choose, to say, well, obviously race predicts health. And that's not actually what it is. And while all of us sort of used this as almost shorthand as a way of saying oh, this is how we'll just sort of write this up, it's really problematic to have these proxies that we use. And it makes it hard for disparities researchers because it makes it really difficult to rely on those large data sets. And so, some of the work Dr. Hatzenbuehler has been really fantastic because it's allowed us to try and use some of those more generalist data to look at health outcomes within the context of policies and other things that we can look at. But it makes it difficult for us to do etiological data. So at least in LGBT data what we’ve seen is 20 years of epi-data which shows a health disparity in the population, but very little until recently on etiology, understanding those mechanisms that the opening discussed as stage 2 and then leading to stage 3, these interventions, which really need to be built on the etiological factors which are on racism not race as Dr. Dale said.

SANNISHA: Thank you. So, the question that was posed, I think there's something I need to clarify. So, the question asked how am I measuring microaggression at the neighborhood level. Microaggression is being measured at the individual level in terms of them responding on a day‑to‑day basis whether or not they experienced a microaggression and across intersectional identities. So microaggression, that might be based on one's race, that they experience HIV status, LGBTQ identity, etc., and other identities. So that's gathered from the individual. What we are capturing at the neighborhood level are resilience factors. So, we're looking for resilience moderators, both at the individual, the intrapersonal, and the neighborhood level. What we're doing is we're doing it both in terms of spatial analysis, so looking for individuals' lived proximity to resources. So anti‑poverty organizations, clinics, hospitals. You know, foundations that are promoting heart and art and wellness. So we're looking for people's proximity as one of the measures, but also the composition within neighborhoods of faith‑based institutions that are around holistic wealth, institutions that are around addressing structural issues such as poverty and legal access and things of the sort, transportation access. So that's what we're capturing from the neighborhood level data that's already there in certain surveys such as the American Community Survey and other things.

DENISE: Okay. Here is a question for Jeremy Goldbach. Can you speak to any challenges that you've had in blending your research in community organizing approaches? Conversely, can you speak about what you think works particularly well?

JEREMY: That is a really excellent question. So, I think the way that I've tried to balance the more clinical aspects and interpersonal aspects of my background and the community organizing background has been to just decide to pursue both at the same time. Whether that's a good answer or not, I'm not sure. I think that I've been really fascinated by this idea of ‑‑ you know, in community organizing, it's all about how do you build community around ‑‑ and largely get people who would not otherwise be interested in this topic interested, right? And make it theirs. I think this is the challenge in, you know, all sorts of large-scale community change. And so, I become really, really fascinated over the last few years with the idea of operationalizing the ally, right? So, when we think about somebody being an ally to a community, it really needs to be more than a great bumper sticker, a Facebook post. All of the sort of typical ways in which we think about showing allyship, resharing. And think about what are the tangible ways I can show being an ally. I think there are a lot of really great lessons we can learn in community organizing about end research and sort of taking those things together and blending them to think about how do we identify popular community leaders. How do we place the locus of responsibility within the context of the marginalized group allowing them to be part of the decision making, allowing them to guide the path forward? Also creating a meaningful space for allies who want to be a part of that system change and maybe just don't know how. So a good example I'll give really briefly is a lot of ‑‑ there are many teachers out there that really want to be supportive of gender minority youth, nonbinary kids or those identifying as trans, and trying to help them with changing their name and helping to get the class onboard with that. We have very little out there to actually guide teachers on that, right. And so, we really need to spend more time thinking about that sometimes teachers are making mistakes and actually aggressing against these youth, not because they're trying to hurt them. They're actually often trying to help. They just don't have any guidance. They don't have any meaningful way of understanding what the right thing to do is. So, I think there's a responsibility that we have in thinking ‑‑ you know, many people can be potentially part of the problem. But many of those same people could be part of the solution. Identifying who those folks are and figuring out for me, anyway, through community organizing strategies, coalition building, comprehensive capacity building and needs assessment, good strategic planning, bringing them onboard with helping guide them in a way they can use that for meaningful change. I think it's been really great. I think has real possible for making longer standing systems change. We can go into a school, we can take an inoculation approach, we're going to train everybody on being anti‑racist or LGBT one‑on‑one. And a year later, there's turnover. And we know that everything regresses back to the mean. So, I think these community organizing strategies really push us towards how do we create sustainable change in systems, implement policy and other things that will really make sure that even after we're gone, they will stay behind. Thank you for that.

SANNISHA: And if I can add to that for a quick second something that Dr. Goldbach was saying. It was bringing out a lot in me because a lot of times I think when we think about community collaborations or coalitions, we think about communities as groups or organizations that are really motivated altruistically and that is the case. People want to be empowered to help their community, but sometimes as researchers or individuals with more resources, we go in and make these failed attempts of partnership that do not leverage money and do not leverage resources. So, I think that's a big part of building genuine relationships, to think about what am I getting out of this equation. What are other at the table getting out of this equation? If we're going in and we're PIs or COIs research coordinators and we're getting a paycheck from these interactions, why is there not a subcontract in place for each and every organization that we're working with? We have to make sure that it's tangible. If we think about allyship dismantling structures of power. Money is power. Resource is power. So, we need to really think about leveraging that when we think about partnerships. Because I think a lot of times, we approach community organizations and bodies as researchers and they're going to be there to do good work and we're just going in with information. I'm not saying our science isn’t fantastic and the research is great, but people have to meet their basic needs and to serve the already marginalized communities that they are trying to serve. So, we really need to make it tangible and make it speak in terms of the money and the funding.

JESSICA: And if I can just add to that. I think that's such an important point that Dr. Dale made. And also that I think going back to some of the earlier points of the other panelists, when we do that in true partnership with the sharing of resources and the funding and we do it in a way we're identifying the root causes of the problems, that's also such an important part of the partnership, because community organizations and people experiencing these disparities usually know that ‑‑ or if they don't know that, that's part of why when I talked about engaging people in structural change, the impact on people's mental health and well‑being of coming to understand those root causes and engaging in efforts to change them and realizing that they have the power to do that and they're part of the solution and they don't just need to be helped by other people, it's such a fundamental aspect of both mental health and creating sustainable change.

DENISE: How are we doing on time? More questions are coming in.

EVE: Keep going.

DENISE: Okay.

EVE: We have about five minutes.

DENISE: Okay. Someone has recommended two articles as examples of multi‑dimensional research on antenatal mental health for African‑American women. So perhaps after the meeting, we'll find a way to make those available. Just to acknowledge that. And then there is a question for Dr. Dale. Can you comment on the types of microaggressions that were identified through the texting system that was utilized? Additional detail on the participation by study participants would also be great.


SANNISHA: I do have to say that we have a high response rate from participants in terms of responding to the texting indicating if they've experienced microaggressions. Individuals can select that they have without elaboration or they can choose to elaborate in terms of the content of it. What we've learned from individuals in terms of the types of microaggression they're coming across, it's often intersectional. So, for instance, someone might have an experience where someone made a comment that indicated that because there's someone living with HIV, they should not be having an actively engaged, you know, sexual experience. It's been microaggression around them being Black women in regards to people touching their hair, in regards to people making oversexualized comments about how they're shaped or how they look, be it their nose or their lips or things of the sort. So, I think it runs the gamut. We also have women reporting microaggressions in terms of identifying as lesbian and bi in terms of what individuals may then say to them. That may be subtle comments, but that are insulting and demeaning of the community. So, it really is a gamut of experiences that people are reporting that they're having in terms of these kind of day‑to‑day tedious little things that are happening. And I should say, you know, we say micro, and I even just slipped into tedious, but these are having macro impacts on their mental health and their well‑being in terms of it being repetitive and happening often.

EVE: Thank you. We basically have a two more minutes. Does anybody have any comments they would like to say? I could ask a question, but it would start us in a whole nother set of ‑‑ it would take too long for two minutes, so I think.

KIARA: Just one more comment. I think it's just given what everyone's been saying, what we've been talking about in terms of structural context, in terms of resources needed for community partnerships and for really maintaining those long‑term for reaching communities. You know, in terms of linguistic differences and all kinds of things. It's just the funding. We talked about what is important in the funding structures and it's really, I think acknowledging how costly this type of work is. How challenging it is, I think especially for early career researchers who are counting on small grants to keep a research program going, mid-career researchers who are working to maintain these partnerships long‑term, that the funding structures really could reflect that and could reflect on the value of this work. So that would be my final comment on that.

JEREMY: May I –

EVE: Jeremy?

JEREMY: May I add a little on that? I just want to say that wholeheartedly such an important point. I think one plug would be that sometimes in these areas ‑‑ I mentioned in my talk the importance of that stage one, being so important because when we take an adaptation ‑‑ although adaptation can often be great. But it does come with challenges in that any blindness that we've had in the development of the original intervention to the needs of different groups are likely to be retained in the ‑‑ to some extent in the adaptation because we haven't built them with the actual community in mind, I think. So, they're just more prone to that problem. And I think that these ‑‑ this early work can be higher risk and I think the reward is high. But I do think that if there are ways to think about how we can fund or create ‑‑ try to look for funding strategies that allow for lower cost, but perhaps higher risk, higher reward work. I think that would help to really encourage junior investigators and even more established investigators those of us who are narrowly focused on my singular path forward in the world to sort of try to be more flexible in thinking of a new ideas and new ways of thinking. So, I think, Dr. Alvarez, I just wanted to highlight your point. Such an important one.

SANNISHA: And I would say ditto. Ditto in terms of the funding and the money.

EVE: Thank you all. Okay. So, I think that's a good place for us to end. A good point for everybody to make. Thank you for a wonderful set of discussions. And we're going to have a break now that will go until 3:40. So, please come back at that time. Am I right, Crystal?

CRYSTAL: Yes. Thank you so much, Eve. And thank you to all panelists again, panel two. We will reconvene at 3:40 for our final session and roundtable of the day. So please join us back at 3:40. Thank you.

EVE: Thank you.

BREAK


CRYSTAL: Okay, Welcome back, everyone. Thank you. I am pleased to introduce our third panel for this afternoon, panel three and our moderator, Dr. Lauren Hill who is the Acting Deputy Director for NIMH Office of Disparities Research and Workforce Diversity. Lauren, please take it away. Thank you.

LAUREN: Thanks, Crystal. So, I'm going to get right to it and introduce our final panel for today. We have Dr. Sidney Hankerson, Assistant Professor of Psychiatry at Columbia University. Debra Hope, Professor of Psychology from the University of Nebraska, Lincoln. Victoria Ojeda, Professor of Family Medicine and Public Health at UC San Diego. Andrea Spencer, Assistant Professor in the Department of Psychiatry at the Boston University School of Medicine. And Andrew Subica. Please forgive me and correct me if I said that wrong. Assistant Professor of Social Medicine, Population, and Public Health at the University of California Riverside School of Medicine. Sidney, you can launch right in.

SIDNEY: Thank you so much, Lauren, for that warm introduction. Thank you thank you the NIH for sponsoring today's conference. I am going to talk about partnering with Black churches to promote mental health equity. First, I'll talk about the rational and feasibility of providing church‑based care, and then go over principles of community partner service delivery.
Depressed African‑Americans have greater depressive symptom severity and are more functionally impaired and have a more chronic form of illness compared to white Americans. And as investigators have turned to community‑based solutions to try to address these disparities, a landmark study came out with results from the National Comorbidity Survey. Across the United States, regardless of a person's race or ethnicity, more people, when they first experience mental health problem are more likely to first seek help from clergy than they are from general internists or from psychiatrists. And churches are especially relevant as a potential source of mental health supports among African‑Americans who are the most religious group in the Unites States by nearly every measure used. For example, 87% of Americans belong to a religious group, the overwhelming majority identify as Christian, although there's a significant percentage who identify as Muslim and 79% say that religion is very important. One of the first studies that I tried to test the feasibility study of church-based care, was to conduct focus groups with 21 pastors from a large church in New York City. 56% of the pastors were women, and nearly 90% a master's degree or higher. Two key themes emerged from our focus groups. First, the pastors really emphasized structural barriers to care. In particular, the role of institutionalized racism, as a factor that contributed to depression in the African American community. Emphasizing the need for us to think of nontraditional community‑based ways of engaging the Black community in care.
Another key finding was the emphasis on partnerships. The pastors were worried of so‑called helicopter research where investigators would drop in, do a study, and then drop out. They really wanted to create sustainable structures of partnership so that interventions could be sustained in the long‑term. So, in partnership with the pastors from this church and with two other churches, we conducted the first church‑based depression screening study with a validated instrument. We used the Patient Health Questionnaire-9 to screen over 120 adults at three different churches in New York City. We were able to recruit and screen 44% of the sample were men and the average age was 54 years. We found several important findings from our study. First and foremost, we found it was feasible to partner with a clergy to conduct a church-based depression screening study, and we found very high rates of depression screen which we defined as a PHQ9 greater than or equal to 10. Another important finding was that men, although not statistically significant, had higher rates of depression than women. So, this showed that churches may be a particular culturally relevant way to engage men in depression care.
So next I'll go over principles of community partnered service delivery. Community partnered service delivery is really rooted in community-engagement and implementation science. Dr. Ken Wells and colleagues in California created community-partnered participatory research to really focus on mental health equity and it's rooted in community partner ‑‑ empowerment, excuse me, two‑way planning, as was emphasized in the panel immediately preceding this, equality, and respect for diversity. And implementation science is the systematic study of the uptake of evidence‑based practices in different settings. For our study, we're currently emphasizing the use of the CFIR, a widely used implementation science framework. Under Dr. Wells leadership, we created a multidisciplinary community coalition for mental health, which has policymakers at the New York City and New York State level, pastors, community members with depression, and grassroot community‑based organizations that have come together to focus on promoting mental health equity, reducing stigma, and building and sustaining community and academic partnerships. I have a brief video to show what the coalition looks like. And while the video shows that I had more hair and less weight than I do now, I do want to emphasize that, you know, the diversity across multiple identities of our coalition is really the heart of our success and we believe that a diverse group of stakeholders is really most vital.
You know, under the coalition's leadership, we have created a community‑based workforce focused on task shifting through the use of community health workers. So, community health workers are trusted community members from the target community who do not necessarily have a formal health training, and they do a number of activities from patient navigation to providing education and to providing evidence‑based interventions. Through our training institute at Columbia, we have trained and certified over 120, 124 to be exact community health workers from 42 Black churches in New York City. The certification is an eight‑week process and it's based on the Center for Disease Control model of training community health workers. Our community health workers are mostly women. The average age is 61. You can see a very diverse range in education in terms of our church‑based community health worker workforce.
So, for our current RO1, we are using this community partnered approach under the guise of the community coalition. And we're conducting a cluster randomized control trial with 30 Black churches. We'll be using two community health workers per church, so a total of 60 community health workers to be delivering the intervention. The intervention arm is actually screening brief intervention and referral to treatment, which is centered upon culturally tailored motivational interviewing. And the study is under the guise of hybrid type 1 effectiveness implementation design, so we are actually going to be collecting clinical outcomes at the patient level, looking at treatment engagement, looking at whether workers are able to increase engagement looking at depressive symptoms and functionality through health‑related quality of life. And we're also going to be assessing the implementation process through a mixed methods design. We'll be interviewing key stakeholders at the organizational level with pastors and doing focus groups with the community health workers. And doing interviews with patients who participated in the study, also looking at whether or not these services are adopted and maintained long‑term.
So, in summary, as has been eloquently stated throughout the course of today, reducing racial disparities really a multi‑pronged and multi‑layered issue. We feel that churches may be well‑positioned to promote mental health equity because of their trust, their access, and their history of providing mental health supports as well as addressing the social needs of community members. And principles of community partnered service delivery hold promise for potentially scaling interventions in under-resourced communities. Thank you. I'd like to especially thank Lauren who was program officer on my K award, and Denise, who's program officer on my R01. Thank you.

LAUREN: Thank you to Sidney. Next, we have Dr. Hope.

DEBRA: Thank you very much. It's a real honor to be here with this amazing group of presenters. I'm going to talk about our partnership with TGD communities in the Central Great Plains. Here's my conflict of interest slide and my appreciation to the various groups including NIMH, who has funded our work.
I'm going to talk just a little bit about health and health services disparities in transgender and gender diverse communities. This is a group that is well‑informed about such things so I am going to spend a lot of time there. I'm going to talk about the design of our community‑based participatory research model as we implemented it trans collaborations. And share a few key findings.
Health disparities, well‑covered today and well‑known to this group. Both in terms of the experience of mental health and medical conditions are elevated. But I want to particularly note the last line on the slide. TGD people have an amazingly high rate of denial of care because of their identity. And as has been widely discussed, we think the structural barrier and marginalization stress contribute to this. I wanted to particularly emphasize, though, the resiliency in this community and that many people lead happy, healthy, productive lives, especially if they're able to access appropriate gender affirmation care. We have a long history of doing research on populations rather than with and I think the engagement with the community was just so eloquently discussed was incredibly important. I think it leads to better science and addresses the history of exploitation by researchers.
Trans-collaborations Our research group started over coffee between myself and Nathan Woodruff, the chair of our community board, about the needs of the community, and we brought in Richard Mocarski, health communications scholar. Our organizational chart demonstrates the importance of our local community board in guiding the work that we do as well as the two academic sites in Nebraska. We also have a national advisory board, and I will note that honoraria for the local board and national board is the same. The local board has been very important in guiding activities that we do as well as things like how much we pay participants and such. We also have some collaborators at some other sites as you see.
We have a number of lines of research. I'm going to talk about the work we've done in systems and a little bit on the policy side. One of the first places we started in trying to understand access to mental health services was to figure out how TGD folks might find a therapist in the U.S. and our board told us that they typically look the same way we all look up information, they use Google. And so, we followed that path and found that if you Google gender therapist in the state, only about half the therapists that you get to look like they're actually TGD affirming based on their intake forms and other online materials. And that they're particularly less likely to be affirming in states that have fewer protections for LGBTQ folks. And you see a graph is one example of that. So, the people most likely to need support are less likely to find affirming therapists. We replicated this using the WPATH provider list who are the folks who should be ready to serve this community. And again, only about half to be affirming in their online materials.
We followed up with our first Google Search with my colleague Sharon Obasi and asked therapists how was it that you received training to work with TGD people, and the most common form of training came from their experience working with clients. Which indeed matches what our local board told us, that they'd been training their therapists for a long time. So, as we start to look at what materials mental health providers had available to provide services, we found out that very little of the literature was based on research or even founded on gold standard interventions for common mental health problems, like anxiety or depression.
Through our R21, we did an iterative process with interviewers with providers and TGD community members in the central great plains to develop some principles of care to identify affirming mental health services. These aren't specific to a particular theoretical orientation, but we're going to be able to use them to guide development of a tool to assess whether services are TGD affirming.
Also, part of our interest in improving care is the need to assess outcomes. So, part of our R21 was to develop a TGD specific measure to address a broad range of concerns that can be used both by practitioners now and in future research. The measure is available on our website, if you're interested.
Recently, we've turned to some TGD specific services. Many of you may be aware that if someone is seeking a medical gender affirmation, that they need to get either one or two letters from a mental health provider. This is quite controversial in the community, many see it as stigmatizing. Our pilot study suggests that people have very mixed experiences. Half see it as positive. Half see it as negative. This is a very important barrier to care, though, that we are going to pursue a bit further. So, in summary, our work with the TDG community has been very essential to this work. Science is a team sport, it’s better to have all the positions filled. Structural racism is everywhere, including images from the Internet noting the smallest figure in the back is the person with brown skin.
I'd like to express an appreciation to our team, our national board, collaborators, and especially to our funders. And with that, I will pass it off to Dr. Ojeda.

VICTORIA: Great, thank you. Well, thank you. It's really quite an honor to be here today, and on behalf of my collaborators, we really appreciate the opportunity to be able to share the results of our research today. I want to acknowledge funding from NIMHD, and I have no other disclosures to report in appreciation as well for Dr. Alvidrez for her support as program officer.
So today what I'd like to do is share some highlights from two of our recently published papers describing the relationship between having access to a peer provider for transition age youth that are living with serious mental illness.
Our study was conducted in Southern California. So, you may be aware that the term peer provider in the mental health services world is frequently defined as an individual who has lived experience and that experience may be based on personal events. Or may be the result of a product of contact with another individual, say a family member or friend living with serious mental illness. The adult services world of mental health service research has sort of embraced the concept and really done a large amount of research with adult populations. You know, studying the impact of peer providers. But really less is known about the impact of peer providers on transition age youth access and utilization to mental health services. And so, when I use the word “TAY,” I'm referring to young adults ages 16 to 24.
And they merit special consideration given that science analysis shows that this particular group of individuals occupies a unique stage given sort of an expanded developmental timeline in terms of neurocognitive processes. And so, research is suggesting that TAY would benefit from tailored interventions to facilitate access to and use of mental health services. These are particularly critical for minority TAY, who also experience additional challenges to engaging with mental health services. So, at this point really, I think the field is just sort of starting to grow around understanding how minority TAY engage with mental health services and how peer providers specifically can help bridge some of these gaps.
And we're interested in reaching TAY early in the careers of having serious illness in order to be able to support not only the recovery but other social determinants of health. And so, our RO1 is designed to study whether the use of peer providers might impact disparities among minority TAY in their use of accessing and engaging with publicly funded mental health services.
Our mixed method study has three phases. So today I'll be presenting data from phase one and phase two. We initially fielded a programmatic survey where we were interested in determining sort of the prevalence of peer providers among programs that serve TAY youth. In addition to that, trying to understand from the programmatic perspective, what the occupational characteristics are of peer providers. We use those data to inform our analyses that we conducted subsequently where we collected administrative county mental health data from Los Angeles county and San Diego county here in Southern California. And I use those data to identify Black, African‑American, Latinx, and white TAY who were receiving services from public mental health programs. All of these youth have serious mental illness per California's definition. And I'll be presenting results from some of these descriptive and regression analyses. And then I'll come back to phase 3 data at the end of the presentation.
As a first step, we found that nearly half of the publicly funded programs that we surveyed did offer peer provider services to TAY clients. In terms of the demographics, we saw an overwhelming majority of clients were Latinx youth, about 67%, followed by about 17% of Black and African‑American, and 15% non‑Latinx white. With respect to our first question, we observed that TAY that were receiving care in programs with peers did experience a larger number of outpatient mental health services than TAY that were receiving services and programs without peers. We observed that when we disaggregated the data by race ethnicity, across both counties, Latinx youth that were receiving care in programs with peer providers also exhibited a greater number of mean visits for outpatient mental health care. Findings were mixed for Black and African‑American TAY clients, but nevertheless, for Los Angeles county, we did also observe a similar beneficial effect of having access to a peer provider.
We also examined whether being concordant in race ethnic status between TAY clients and their peers was associated with any differences in terms of outpatient mental health services. And similarly, we did observe that TAY that had ‑‑ Latinx TAY that were concordant in race ethnicity with their peer providers were also more likely to have a greater number of mental health outpatient visits. Those data are available in the manuscripts.
In addition, we also examined whether matching by age and sort of service array impacted TAY's use of services. And so you can see here that when programs also have TAY aged peers, in other words, peers who are matching their clients by also being in that same age range, across both counties, TAY were also more likely to engage in greater number of mean visits as compared to TAY in programs without peer TAY ‑‑ age TAY peer providers. In addition, when we observed that programs where peers were offering at least four or more services similarly clients were more likely to have a greater number of mean visits. But the outcome was not consistent in terms of the number of evidence‑based practices that peer providers provided for their clients. So really, it was more the number of services that they offer.
In terms of the conclusions for these findings, we certainly saw that consistent with some of the adult data, peer providers are associated with greater engagement and retention of outpatient mental health service use by TAY clients, including Latinx TAY minority clients. We can't say for certain that that is true for Black TAY, and so we would certainly recommend having additional research to expand our sample of youth in programs that serve Black TAY. In terms of the activities that peers engage in, it's certainly their use of evidence‑based practices and the number of activities that they're implementing appear to contribute to the narrowing of those disparities. But we would like to point out that some of the challenges or limitations of our study are demographic variations across both counties as well as structural differences and how each county approaches mental health programming. And I'll highlight in the next slide as well the issues related to lack of a standardized definition with peers. Nevertheless, our findings do highlight the contribution of peer providers and TAY peer providers to long‑term engagement of Latinx and Black TAY in publicly funded mental health services.
So, I think these data are just starting to shed light on the need for additional TAY focused mental health service and research focusing on TAY peer providers in public settings. With respect to emergent areas for research, I think one of our studies pointed to greater need for clarification for what TAY peers are doing and how they implement their roles. I indicated there is lack of a standardized definition which has made it really challenging for organizations to interpret who was a peer and sort of how they implement that. And that is in part related to financing of this position and whether there's reimbursement available. So, in some cases, TAY peers are ‑‑ TAY peer providers are paid staff and, in another instance, as we saw, there are volunteer staff. And so that certainly has an impact on, you know, the case load that they might carry the kinds of trainings and skills and other organizational support that they bring to this role. And so similarly, we would suggest that there needs to be sort of additional clarification regarding how organizations support TAY peer providers, not only on a daily basis, but along their professional and long‑term trajectories in implementing this role. And this work also highlights the need for additional and improved theoretical and conceptual models to really elucidate how peer providers serve to reduced disparities in mental health services.
I mentioned that we have a third set of data that we're working on which is our qualitative interview data. So we have interviewed clients, peer providers themselves, as well as administrators and sort of aiming to elucidate at all levels of care, you know, how the peer providers implement their positions and challenges, for example, from organizational levels to supervising peer providers as well as implementing them in the first place.
So, you know, there's quite a bit of work that we will be still disseminating over the next year around this.
And in addition to that, we also have been examining how peer providers might support as GM TAY clients and also as GM TAY peer providers. So, there's ample area to work in here. And I think one of the last pieces is echoing what some of the other colleagues and speakers have mentioned today, is that certainly COVID has created a shift in service delivery. And so it is unclear, you know, all of our work was conducted pre‑COVID, so it's unclear whether and how TAY peer providers and peer providers in general are able to deliver their services to clients in the telehealth model and whether or not there is an effectiveness to those services in relation to, you know, in person level of care. So, I would like to thank you all for your time and appreciate your attention. Thank you. And I would now like to introduce our next speaker, Dr. Andrea Spencer.

 
ANDREA: Great. Hi, everyone. It's really, really a pleasure to be here. And it's great to see you, Lauren. I'm going to present on my work developing an intervention to address engagement in ADHD care. I am a child psychiatrist by training, and I'm at Boston University School of Medicine and Boston Medical Center.
Here are my disclosures. No conflicts of interest from my funding. So, I'm going to start with an orthopedic cartoon, because it just made sense with start with orthopedics at a mental health conference.
This cartoon you have the doctor saying now for your shoulder problem, I'm going to write you a referral. The patient says okay, cool. Just look up a specialist and make an appointment. Sounds good. And the patient is thinking "I'm never going to do this." So, this sets the stage for a discussion about engagement. However, we are talking about attention deficit hyperactivity disorder, and the premise here is that effective treatments exist for ADHD, but that engagement in ADHD treatment, including treatment utilization and adherence is very low, and it's particularly low for socioeconomically disadvantaged and underrepresented minority families who have lower service utilization rates, higher rates of treatment dropout and greater loss to follow‑up. And so, we wanted to address this disparity by developing an intervention to improve engagement in treatment for ADHD among low‑income underrepresented minority children. And we ‑‑ so I'm going to present today the results of our qualitative study informing development into this intervention. We conducted a qualitative study with in‑depth interviews in three languages, English, Spanish, Haitian Creole, with 41 parents of children who were in treatment for ADHD. And we wanted to understand the process of engagement in ADHD care, identify barriers and facilitators to treatment and then identify intervention targets. And we also formed and consulted closely with the ADHD community advisory board for input on intervention delivery.
So, for our qualitative study, we used thematic analysis. And here, I'm just going to give you some brief information about our demographics. About 2/3 male children mean range was 11 they spanned the range from 4 to 17. About a third were Latino or Spanish origin. Over half identified as Black or African‑American. And the majority were publicly insured. The parents who we interviewed, were largely females. About 30% spoke a primary language other than English. About 40% were born in one of nine countries outside of the U.S. And very ‑‑ a huge variation in parent education level. So, here are results from our thematic analysis, care givers described to us six stages in the process of engaging in care for their child's ADHD. Here I present to you the six stages of engagement in ADHD care that we found, including stage 1 normalization, hesitation, stage 2, stigmatization and fear, three, caregiver advocacy, four communication and navigation, five, care and validation. And then six, preparation and transition. And the important thing, if you take kind of one point from this short talk is that parents really described engagement in ADHD treatment like a developmental process. They described a very lengthy process important elements they did not feel could be fast-tracked or truncated, and they described the need for successful completion of each stage or navigation of each stage for a positive outcome that facilitated treatment engagement going forward. And so here I just present these ‑‑ this developmental process with some opposing outcomes. So, our caregivers described navigating these stages largely alone and with variable success. And that the difficulty with any stage really led to problems with subsequent stages and interfered with treatment engagement.
So, I'll just go through that I don't have time to delve into all the stages. It would be really fun for me to be able to do with you guys. But I will talk about at least one and see if we can sneak in a second. So, for stage 1, this is our normalization and hesitation stage where caregivers realize the child’s symptoms were not normal. This was a quote from one of our caregivers. I just kept telling myself he's gonna grow out of it, once he gets older and stars school and he's in kindergarten, has more structure, and he just didn't.
What I mean by opposing outcomes at each stage is we had parents describing that some ultimately accepting this, and the need to accept this before actually moving on to later stages. And other parents describing that reluctance to do that really led to this delay for sometimes even years of seeking treatment.
Our second stage was stigmatization and fear, and this one is very important and well‑described. The caregivers feared ADHD stigma and discrimination that delayed their request for care. So, this is a quote from one of our parents when it comes to the African‑American community. [Reading slide] So this particular parent was described kind of this dichotomy of ADHD stigma within her community, and then system level systemic racism that she felt was creating a barrier at that level, and that she feared as well.
So I'll leave ‑‑ I'll leave the rest of the stages without specifics, but I'm going to go back to our cartoon because what this really drives home, and it's a caricature here, but it's really true that the way we decide how to proceed with treatment does not take into account this experience that I'm talking about.
And so our kind of concession of symptoms and diagnosis and treatment really leaves out a lot that will help us help patients engage, and that the ‑‑ so what we did was rather than identifying discrete barriers and facilitators to treatment, we found we needed to shift to identifying facilitators to the successful progression through the stages of engagement and care, and to developing an intervention that would enhance and facilitate this progression. And being able to tailor that effectively. So, we did develop an intervention called START, and really centered this around facilitating successful progression through the stages of care. Trying to make it flexibly deliver so that it could be parent centered and stage dependent. And right now, we're currently in open pilot acceptability and feasibility testing of the intervention and it’s five modules here.
And I think my time is up, but I don't want to end without thanking all of my mentors and advisors and, of course, all of my patients and their families. And now we have for our next speaker, Dr. Subica.

ANDREW: Aloha, everyone. Thank you for having me here today. I know I'm the last person speaking, so I'll try and move quickly so we can get to the panel discussion.
This is Citizen' panels: Tailoring evidence‑based interventions for underserved populations.
So, as we've heard throughout today, it's acknowledged that interventions may not always generalize to real world settings. These are clinics, hospitals, diverse communities, as well as diverse populations, whether by race/ethnicity, sexual orientation, or physical or psychiatric disability. As a result, individuals from different contexts or different populations, they may require adaptations in intervention content or delivery. While not every evidence‑based intervention requires to be adapted for every underserved group, there are circumstances in which adaptations may be necessary and warranted to improve treatment effects and outcomes. For instance, if a universal intervention is deemed unacceptable or disconnected from a target community.
There are several models for adapting evidence-based interventions. I'm going to talk about deep structure adaptation briefly. These are evidence‑based interventions that become infused with cultural world views, practices and contexts of a target population and the reason you do a deep structure adaptation is you potentially can increase the likelihood that you will achieve your desired treatment outcomes and also better bring your intervention to scale in the target community. One approach is citizen panels. This is a CBPR methodology grounded in the principals of deliberative democracy and deliberative methods. Deliberative methods are not well‑known yet in public health, but it's commonly used in public policy to elicit public values and priorities, to inform decision-making on important policy issues. So, when you think about deliberate methods, people bring different sides of an important policy issue. Usually for public forums, they may then ask for public comment and feedback, but in deliberative methods, there's another process. They ask members to deliberate and then render these decisions based on the data that they have been given.
Now I am going to talk about something that is citizen panel for health equity. It's an approach that is pretty well aligned with some of the things we've heard today. Dr. Alegria was talking about the co‑production of programs with communities so this is a way to do this with underserved communities. So, the goal of citizen panel is to gain informed insight and decisions from your target population so that you can design more relevant, accepted, and effective interventions for that population. Typically, what we do is we convene 15-20 members of a target population. We bring them to a room and then I would present detailed presentation of an intervention- related topic we want to cover and then the decisions I would like people to think about and then tell us. Then they break out into the small groups. Every group would make their own deliberations, make their own decisions and then we come back together. Everyone shares their discussions. We try and achieve a consensus from this panel for the decisions we're trying to get.
So, we've done deliberative methods with a variety of communities. Latina/Latinos, people living with HIV. But, the community I want to talk about today are native Hawaiians and Pacific islanders. There are 1.5 million Pacific islanders living in the U.S., and over 10 million living throughout the Pacific, many of them in U.S. affiliated territories. Pacific islanders have endured extensive colonization and historical traumatization at the hands of the U.S. This is exemplified, for example, by the U.S. military overthrow of the Hawaiian monarchy in the 1890s. But the many other historical traumas perpetuated on Pacific islander peoples by the U.S. For instance, 12‑year period of World War II, the U.S. military detonated an equivalent of 7,200 Hiroshima size nuclear weapons in the Marshall Islands, but the problem was they failed to adequately evacuate a number of the Marshallese people. As a fall out the detonation contaminated Marshallese lands, food sources and unfortunately the Marshallese people. So, because of these historical traumas by the U.S., Pacific islanders living in the U.S. now have among the highest rates of health disparities as well as mental health and substance use disparities of any racial group in the U.S. But consistently, the main finding that we get and the very limited mental health research we have with Pacific islanders suggests that the issue is that they rarely seek behavioral health treatment. I imagine this is somewhat similar to Dr. Spencer’s findings around engagement with children with ADHS. In our research we found that over 70% of Pacific islanders who have mental health needs will not seek treatment. The general population is about 60% and, in LA county, they created a two‑year program, spent a lot of money to engage Samoan Americans in services. And after two years, they were only able to engage four Samoans out of a community of over 50,000.
So, we conducted citizen panels with NIMH support to design the first culturally rounded mental health treatment seeking intervention for Pacific islander populations. And we ask them to do three things. First, select the strategies from existing interventions that would be most likely to be effective for Pacific islanders. We then ask them to shape the content of the strategies that they chose so that they can incorporate Pacific islander practices and beliefs. Then we asked them to define the optimal format and settings for delivering their strategies in their communities. And this is what citizens panel would look like. This is me. The first ten minutes of every session, we spend some time where I present the evidence‑based intervention strategies for people to deliberate on. And the reason I actually have this community here is this is the Marshallese community that I was talking about earlier, but in northwest Arkansas. Ant they are interesting because in addition to having severe mental health and physical health disparities, there are currently just featured in AP psychiatric news, because they're experiencing the highest rates of COVID‑19 infection immortality. Pretty much of almost any community in the country. So, I'll wrap up by saying this is what we found. The panels chose that strategy should increase mental health literacy. They should decrease stigma. And they should improve knowledge of the treatment process, which I call demystifying treatment. They said that to deliver this content, we should be using narratives, also known as stories, because Pacific Islanders are ingrained storytellers. They transmit important cultural information through stories across the generations, and so they're innately prepared, they said, to be influenced by these stories.
When we asked them how should we deliver the story, they said we should use films as opposed to other formats, like testimonies, PowerPoints, or photo novellas. And this is why it's so important to do citizen panels. Going in, we actually thought they would pick photo novellas because they're simple, they're straightforward, and they're also graphic. But they unanimously, all panels picked films. This is a cervical cancer intervention called {?}. And with the data from the panels, we created Talking Story, and we are now in the process of trying to film these kind of films with specific Islander actors.
I'd like to acknowledge the sponsors, NIDA, NIMH, NIAAA and Community of Hope Comprehensive Cancer Center. And multiple community partners, without whom any of this research would be possible. Thank you.

LAUREN: Thank you. That was a bang‑up panel. I kind of forgot I was supposed to be moderating, but I am. Are there any questions that have appeared via email?

JENNIER: Yes. We have three or four questions. The first one, I think, may be directed to Dr. Hankerson but anyone who wants to respond. Can you comment on how much of the differences we are seeing in rates of mental health disorders or burdens, I suppose, are related to limitations in our measures? Given that many have been developed non‑representative samples or non‑diverse samples.

SIDNEY: That's a wonderful question. There definitely is evidence that there are racial differences in depression symptomatology. For example, African‑Americans and Latinx adults may present with more somatic symptoms compared to white Americans. However, I'm not specifically aware of the numerical difference in prevalence or symptomatology that may result as a result of using different measures. I can say for our studies, we used the PHQ9 which is one of the most validated screening treatment response measures used in diverse populations. But I think that's a wonderful question that should be investigated. If anyone else knows, I'm happy to hear their thoughts.

ANDREW: Yeah, I can add to some of that. I can only speak to working with Pacific Islanders, but same issue I had to encounter. Probably the first barrier we encountered with all our studies was trying to translate things like the PHQ9, the GAD7, just these core good psychometric measures that everyone uses, and it wasn't the translation. That was the easy part. It was very difficult to translate the constructs of depression, even mental health. There were just weren’t these terms and we tried to do it in multiple Pacific Islander communities with different languages and dialect. The bar is this cultural validity when it comes to measures because we encountered that we actually had a lot of issues with cultural validity, even if we did back translation. Kind of all the things you are supposed to do, and it still wasn’t enough. We had to go back and get our council and all these experts involved just to do a survey.

JENNIFER: Okay, thank you. Next question for Dr. Ojeda. Did your study include peer support groups and what types of evidence‑based practices did peers implement?

VICTORIA: Sure. We have on the qualitative side done focus groups with peer providers themselves as well as the administrators. In terms of the evidence‑based practices, you know, we have a whole list. I think there were about ten different items that we examined that I'd be happy to share those, including Mental Health First Aid, case management, motivational interviewing, all sorts of evidence‑based practices that would be, you know, sort of common for the lay type of provider.

JENNIFER: Okay, thank you. And also, for you, as well as anyone else who does work with peer providers, are the services of peer providers reimbursable in your state?

VICTORIA: I believe some services are reimbursable in California. But again, it all depends on documentation, and, you know, sort of a sneak preview of what we heard in the qualitative piece is that because of the range of activities that peer providers are carrying out on a day‑to‑day basis. I alluded to this in my discussion. For example, riding a bus might not be reimbursable. I don't know what that specific example is. But things that were, you know, taking somebody out on a walk or doing shopping with them or helping them, teaching them how to do housework, like doing laundry or cleaning the kitchen or bathroom, whatever it may be. Some of those activities may or may not be reimbursable. One of the big challenges I heard from administrators is maintaining recordkeeping and just all of the notes that would support reimbursing of those services that were eligible for funding locally so I think that does pose a challenge for many in the programs.

SIDNEY: I would like to add that SBIRT is reimbursable through Medicaid in New York State. So, we actually are ‑‑ for our study, we are going to be collecting kind of how much time the community health workers spend in services so that we can try to create a business model, you know, for this. So, this could be used after the grant is over.

JENNIFER: Great, thank you. Dr. Hankersen stay on the line here. The next question is can you say more about how church‑based community mental health‑workers in your study receive referrals and make referrals to mental health services?

SIDNEY: Sure. They are actually ‑‑ we're going to be ‑‑ we've had to do everything virtual now. And so, they're going to be receiving referrals ‑‑ we're creating a ‑‑ an online video, in which pastors from all the churches are going to be speaking. Community members who have experienced depression and who have gotten treatment will be sharing their experiences. That is going to be disseminated virtually at various online church‑based events. And immediately thereafter, community health workers will be reaching out to members from the congregations to identify people who may be experiencing distress and eligible for the study. That's how they'll be getting the referrals. In terms of making the referrals, we're in the process of updating an extensive list of community‑based mental health clinics as well as those free and sliding scale clinics as well as one of the churches from my care ward actually created a free-standing church based clinic that’s going to be a primary referral care site for our study.

JENNIFER: Great, thank you. Next question for Dr. Spencer. Can you say a little more about what stage your intervention will occur? Is it once families have already made contact regarding ADHD services, or does it occur at an earlier time? And also, what how are you measuring engagement? And what tools are you using?

ANDREA: Yeah, those are awesome questions. So, I think both of those questions are things that we're grappling with in the pilot test basically. So to try to answer them as best I can, we're enrolling families who have ‑‑ there's a suspicion of ADHD, but not yet a diagnosis, or kids who have just been diagnosed. Or kids who having diagnosed in the past but aren't in treatment. And so, a variety of families, families who might be in a variety of stages of engagement to see if we can really ‑‑ if this really works to tailor ‑‑ to individualize the intervention based on engagement stage. In terms of measurement of engagement, I think that's ‑‑ it's a very important and difficult issue in the field. I know that people who have measured engagement in child mental health services before ‑‑ often it's measured by visit attendance, and others have measured, you know, other kind of things like school, you know, receipt of new school accommodations or medication prescriptions. I still think those are probably ‑‑ I've been wondering whether we could measure increases in engagement by measuring the stage of engagement pre and post‑intervention. But of course, we don't have a tool right now to do that, so that's another thing that I'm thinking will probably be beneficial as we go forward. Hopefully that answers your question.

JENNIFER: Great, thank you. Next question is for anyone who wants to answer. How do we balance cultural or linguistic individualization of approaches to address mental health disparities while working within a system that has financial or provider limitations that in many cases dictate a one size fits all approach? Any takers?

SIDNEY: I'll wade in. I think there's really an exciting opportunity in terms of this notion of task shifting, which has been ‑‑ most research has been done in low-and middle- income countries. But the notion of trying to use peers, community health workers and other paraprofessionals who can provide kind of brief evidence‑based interventions and interventionists who are culturally and racially concordant with the group that they'll be delivering care to I think has great promise for addressing some of the limits of that traditional system.

ANDREA: Yeah, I can add that I completely agree with what Sidney said, and I think the additional thought I have is that those peer or community health workers need to be valued for the amazing value that they have to the system for patients, and we have seen in our safety net setting in Boston, you know, some success with this approach. But some limitations in the sense that some of these positions are high turnover positions. And that families appreciate the longevity of the relationship. So, I think that we need to think about that going forward. You know, given the increase in research really supporting that these roles can be effective for engagement. I think that needs to be a consideration going forward.

VICTORIA: I agree with everything that you both just said and wanted to add that I think that part of the challenges ‑‑ I think still trying to build some of the pipeline to some of these professional occupations so that we have some of those cultural insights. Just thinking back to some of the data that we've been reviewing from our qualitative side. For example, our TAY clients talked about having somebody that spoke their same language, in that case, was Spanish, or that understood some of the family dynamics. Bringing that to bear with somebody that also has additional training that is ‑‑ that person can become institutionalized. I think that's what you're talking about. Building pipeline programs that can support diversification of mental health workers staffing models, not just relying only on the community‑based or sort of paraprofessional models, because I think what you've alluded to, which is that that turnover creates disruption in care that people are really seeking for. So, having a more stable workforce I think will benefit everybody in the long‑term. Thank you.

DEBRA: I think all these super creative ways to pull in community workers, and peers and stuff, are really important. But at the same time, I think being very aggressive about getting traditional providers prepared to serve the communities we're talking about is very important as well. I know there's some changes in graduate training and preparation, but I think that really lags behind our understanding about structural inequities and we need a generation to really take on those things and transform the system, but they need to have that training and that community engagement to understand what's needed.

ANDREA: I think the other thing that I've been thinking about is manualized intervention approaches can be really helpful for fidelity, but also lack that flexibility when you have very diverse communities. I think if we can build interventions‑‑ and some people have done this already with success, build interventions that can be flexible, you know, and have that built into the intervention. I think that can be really helpful, too.

JENNIFER: There's a follow‑on question about the pipeline for these kinds of providers, what are research approaches that can promote those pipelines.

VICTORIA: I'd be happy to share one experience. For example, at UCSD, one of the things that we ‑‑ a colleague of mine and I have been doing since 2007 is a free clinic that is actually based in Tijuana, Mexico, just across the border. But we eventually were able to get UCSD to institutionalize that volunteering experience with an academic course, so that there is a field component and there's an academic component where we work with undergraduates and mental health is really a key component of what we do. Because we work with individuals that are highly traumatized, including deportees, substance abusers, migrants from the caravans or from Haiti and other communities as well. So that has been an effort we have really undertaken to try to build the pipeline and all sorts of health professionals but a real big emphasis on mental health services so that from the undergraduate level, we're starting to build awareness of using evidence-based measures, like the patient health measure, anxiety measures, and so forth. But pairing field work with, you know, the course that ‑‑ also involves research so that we start getting exposure to research from a very early stage, so those are usually about second year students that start taking our course in global health. Many of them, we're just in the process of doing an evaluation of our program, and witnessing that students are going off into social work, you know, psychology programs, and certainly medical programs as well. Some PA programs. So really, I think that's an opportunity for us, but it's kind of hard to replicate, I think, in many settings.

LAUREN: I actually had a question that was related to that. So first of all, let me say it's so great to see so many of our NIMH K award All‑Stars on this call. And to thank everyone engaged in this research, because it is labor‑intensive and financially intensive and not easy. So, thank all of you for your perseverance in addressing this really important topic. So, my question, having been training PO for so many years, is what do you all think the people coming up who the next generation of mental health disparities researchers, what do they need? Maybe something you didn't get that you wish you had or something that you got that you found to be very valuable in your own training and preparation. Because as we said in the beginning, as Maggie pointed out, many of us are psychologists or social workers or physicians and we're being asked to shift the paradigm and to think outside of, you know, the individual in the clinic. And I'll stop there. That's an oversimplification. Any thoughts you have about how we might train the next generation of mental health disparities researchers? There's no right answer.

DEBRA: I'll jump in and say I think that's a wonderful question. It often comes down to funding, freeing up time for people to do the research and to get the training that they need. I know that, you know, there are some funding streams, both getting people started at the undergraduate level, which I think is really crucial to build that pipeline into graduate school. But then really prioritize funding at the graduate level. And to really be careful that the traditional structures about what counts as good science doesn't rule out some of the most creative ideas. I think that that sort of structural ‑‑ you know, structural tradition, structural bias is built in, and that kind of high risk, high payoff potential for some of the folks that are coming up with new and different ideas coming out of communities to support their work at any level, whether it's NRSAs, F31s, F32s, some were K awards, to really be mindful that a lot of the best ideas may not look like anything we've seen before. And maybe thinking about how to evaluate those.

SIDNEY: Yeah, I completely agree with Debra. I want to just underscore an earlier point she made about really embedding equity within the entirety of kind of the workforce. Both the clinical and the research enterprise. I think leading ‑‑ you know, academic institutions disparity researchers can become very siloed, and are not often rewarded for the essential amount of time that is necessary to be in the community. And then when it comes time for promotion or for grant funding or publication review, et cetera, figuring out ways to acknowledge or recognize that time in the community I think would be helpful. And really embedding equity into every aspect of every possible RFA, so that this is not just something that a group of people are addressing, but the entire, you know, NIMH research enterprise is thinking about and is aware of.

ANDREW: I can add ‑‑ I agree with everything Dr. Hankerson was saying. One of the things that I think is important, because I think very structurally, is representation, and that representation matters. And the more that we can get people who are affected by health disparities actually in the programs and then academic centers, the conversations start to change. And then as Dr. Hankersen said maybe more people get on these review panels. So, I think we have to start really structurally. But the reason I like that idea is because I come from clinical psych program, and I did not really learn about CBPR. We didn't have a conversation about disparities. It was mostly around culture when I was coming up. And I think even basic exposure, if you have people who are interested or who have lived experience of this, they'll just naturally gravitate towards it. If I just heard CBPR, I'm sure I would have jumped on it well before ‑‑ I had to do a post‑doc and learned about it. I would have learn loved to have learned about it in my first or second year, just by exposure. Just a couple lectures, a couple discussions would have been real great. You don't have to start out big out there.

ANDREA: Yeah, I completely agree with that, too. My exposure to those things was also very intentional. I had to seek that out as opposed to it being more widespread. I also think making the connections ‑‑ you know, people across institutions nationally. I'm sure there are other ‑‑ I know there are other ‑‑ I'm sure there are many that I don't know, people who went through the CHIPS program here. But those connections are long lasting actually, and they feed on themselves, and you ‑‑ as a resident or a post‑doc or a doctoral student, you're kind of steeped in what you're doing. And it can be really helpful to broaden, you know, everybody's experiences that way and make those connections that actually probably will last, you know, throughout one's career.

LAUREN: Thank you, that's great. And I should have also acknowledged the CHIPS All‑Stars are here, too, many of you. So, we're right at time. Thank you, guys, again, so much.

 
JENNIFER: We did have a question or comment from Maggie. If you want to unmute.

LAUREN: Yes, please, Maggie.

MAGGIE: Sure. I just wanted to say, that like Andrew said, this is learnable. This is not necessarily something we cannot do. I wanted to mention that we should fund more community academic policy partnerships, because that would give us a chance to get enmeshed and what are the issues of interest to the community, but also the policymakers. And I think like Andrea and others have said, we can learn this. We could have a train-the-trainer model where we get attached to people that have done and it have been successful at it.

ANDREA: The other thing I forgot to mention, which feeds on what Andrew said, is that ‑‑ I totally agree that we also have to, you know, work to have more people with lived experience and diversity in our researchers. And that is ‑‑ it's hard when our residents or our grad students are coming out of their programs and the academic, just financially for people, the academic jobs are tough and they're competing with other jobs. And I think so I think that's important to consider because it goes into everybody's calculation as they're coming out of their training experience.

LAUREN: Those are great, great responses. Thank you. Crystal, I thought that Jennifer was going to jump in and do a wrap‑up. Should I keep going? Or can I turn it over to Jennifer?

CRYSTAL: Yeah, I think we can wrap up now. Thank you so much, Lauren, and thank you to our panel 3 for a wonderful discussion. And thank you all for attending today's Day 1 of our Virtual Disparities Workshop. I invite you to come back tomorrow. We have Day 2 in the afternoon for a continuation of wonderful panel presentations and discussions where we will wrap up a continued discussion of these really incredible discussions about disparities research and continue to discuss some of the gaps and challenges that we kind of laid forth. And we will call it for today. Thank you all again for attending. We look forward to seeing you tomorrow. You can use the same link that you received in your emails to access for tomorrow. Thank you again.