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Transforming the understanding
and treatment of mental illnesses.

Session 2: NIMH 75th Anniversary Event 2: Amplifying Voices and Building Bridges: Toward a More Inclusive Future

75th Anniversary

Transcript

Session 2: Inclusion in Access to Care/Health Disparities
 

CHRISTINA BORBA: It is a pleasure to be here today with NIH in the NIMH Distinguished Leadership and to introduce this session on Inclusion and Access to Care and Health Disparities.  My name is Christina Borba.  I am the director for the NIMH Office on Disparities Research and Workforce Diversity.

This next session, we'll examine who is able to access the benefits of NIMH-supported research and who is not.  I'm excited to talk about how we at NIMH can better consider equity in designing and conducting our research and the important role research can play in addressing disparities.

Like our last panel, I'm going to introduce our three speakers now.  And so, you will hear three very dynamic speakers today.  First, Dr. Jessica Goodkind is a professor and associate chair in the Department of Sociology at the University of New Mexico.  Dr. Goodkind's research addresses mental health consequences of structural inequities, which involves partnering with communities to develop and assess processes that promote healing, wellbeing, and social justice.

Next, we will have Dr. Benjamin Cook, who is the director of the Health Equity Research Lab at the Cambridge Health Alliance, a professor in the Department of Psychiatry at Harvard Medical School, and a visiting clinical associate professor at Albert Einstein College of Medicine.  Dr. Cook's health services research focused on improving quality of life, access, and quality of treatment for individuals living with mental illness and substance use disorders.

And then last but not least, Dr. Sidney Hankerson is an associate professor and vice chair of Community Engagement in the Department of Psychiatry at Mount Sinai.  Dr. Hankerson is also the director of Mental Health Equity Research in the Institute for Health Equity Research at Mount Sinai.  His research focuses on reducing racial and ethnic disparities in mental health treatment.

The following 20 minutes spotlight presentation will continue in succession, and I'm going to welcome now, Dr. Jessica Goodkind, to the podium.  Thank you.

JESSICA GOODKIND: Good morning.

MULTIPLE SPEAKERS: Good morning.

JESSICA GOODKIND: Let me just see if it could -- okay.  Well, it's really an honor to be here.  And thanks to NIMH for inviting me and for really being among all of these amazing speakers this morning.  I think you're going to hear a lot of common themes in the -- in what we're all going to talk about.  And hopefully, that will really reinforce some of these ideas today.

I'm going to pose three critical questions today that I want -- that I think can help us move toward a more inclusive future in mental health and mental health equity.  And these questions that I'm going to share -- and then I'm going to share three key ideas that I think can help us to achieve our goals in terms of mental health equity.  And they really come from me -- from 30 years of community-engaged research in partnership with refugee, immigrant, and Indigenous communities.

And you can see, just a few of the people here. I wish I had time to acknowledge all of the many individuals, communities, and organizations that I've partnered with.  But for now, I just want to make sure to explain that what I'm going to share with you and the work I have done is not mine alone.  And I also really appreciate NIMH and also the National Institute of Minority Health and Health Disparities for funding most of this research.

So, the three critical questions that I want to ask us to consider today are, first of all, what is a mental health intervention? Second, how do we build on strengths and competencies instead of focusing on deficits in our mental health interventions?  And third, what do we count as evidence of intervention effectiveness?

In terms of this first question, what is a mental health intervention, by that, I mean, does it just happen in a therapist's office?  Where else could it happen?  And what else could it involve?  I'm going to share some examples of how it can occur in community-based settings, how it can focus on mutual learning and social support, and also focusing on change at multiple levels.  So, not just thinking about individuals and what we may need to change or fix about them, but how can we change structures and the context in which individuals are embedded that may be constraining or inequitable?

So, my learning and development as a mental health researcher began back in 1993 when I spent two years working in a refugee camp in Thailand.  You can see some of the kids here that I worked with in the camp.  And I was helping prepare Hmong and other ethnic minority refugees from Laos to resettle in the United States.  And it was really during this time that, first of all, I saw these multiple different influences on people's mental health.  So, not just the individual traumatic experiences they had been through, which were a lot, but also the daily stressors of life in the refugee camp, the uncertainty, and many different structural inequities that were impacting their mental health and what would happen to them next.

I also though saw at this time, that people who experience adversity and who -- and structural inequities have amazing coping skills and other strengths that are -- often go unrecognized but that are critical for their survival and that are really important for us to build upon.  So, when I came back to the United States, I spent some time traveling around and visiting many of the families who I'd worked with in Thailand.  And it was at this time that I decided to go to graduate school at Michigan State University where I could continue to work with Hmong people.

And it was really at MSU that I learned to ask this first critical question that I'm posing to you, what is a mental health intervention?  And it wasn't just from what I was learning in the classroom, but also through spending time with two of my closest friends and research partners, who you can see here, two Hmong women, who came from Thailand -- well, originally from Laos. And through spending time with them and their families, I saw the different stressors that they were facing, the different structural barriers, challenges accessing housing, employment, health care, also social isolation, and the devaluing of their knowledge and experience. 

And most of the Hmong people I know, they didn't want therapy or someone to talk to, they wanted a safe place to live.  They wanted a job with a livable wage, healthcare that was financially, linguistically, and culturally accessible to them.  They wanted to be seen as worthy and competent people who have important knowledge and skills that they could contribute to their communities.

So, it was during graduate school that I first developed and tested a novel mental health intervention, which was funded by NIMH way back then, which I called the Refugee Well-Being Project.  I've been implementing and studying iterations of this project for the past 25 years, first in Michigan and now in New Mexico, with people from all over the world, from Laos, Afghanistan, Iraq, Syria, the Great Lakes region of Africa, and Mexico, Central and South America.

So, I'm going to call it RIWP for short, because the Refugee and Immigrant Well-Being Project is a mouthful.  This is an intervention that is designed to prevent and reduce high levels of distress experienced by newcomers in our communities, by addressing multiple domains of their lives and by creating change at multiple levels.

So, you can see here some of the goals that we aim for in this intervention.  And I want to highlight the last one there, that again, it's not just about changing individuals, but also really improving our communities' responsiveness to newcomers.  And so, again, especially when we think of refugees and immigrants, we often think of how they should adapt to their new communities, but our communities can adapt and change.  And that is really critical.

So, how we do this in the RIWP model is rather than rely on professionals, RIWP brings together university students and refugees and immigrants to work with and learn from each other for six months.  The students enroll in a two-semester course that involves learning about the lives and experiences and cultures of refugees and immigrants that they'll be working with.  They learn hands- on skills around empathy, values clarification, mobilizing resources, identifying strengths, theories of adult education and social change, and more.

And then after about two and a half months in the classroom, students and families start meeting together in weekly learning circles.  These occur for six months.  And then students and families also begin to work outside of the learning circles, spending at least four to six hours each week with each other, mobilizing resources.  So, I'm going to explain a little bit more.

Here you can see a photo of a learning circle.  The first half of each learning circle is called cultural exchange.  And this is a time where, aided by interpreters, newcomers have the chance to learn what they want to learn about life in the United States.  And they also have the opportunity to share with students about their lives and cultures and experiences.  So, it's really focused on mutual learning.  And it creates a space that really recreates valued social roles for newcomers who have often lost their communities, many of their family members, friends, so rebuilding that social support.

The second half of each learning circle is one-on-one learning time.  And this is really directed by each newcomer and what they want to learn, but they partner with a student to work on.  It could be learning English, filling out job applications, reading and understanding their mail.  And newcomer kids get help with their homework.

After about two weeks, when students and newcomers have had a chance to get to know each other a little bit and build trust, they're officially matched together.  And they begin to spend time together, like I said, at least four to six hours each week outside of the learning circles, focused both on individual- and system-level advocacy.

So, you can see in the picture there on the right -- or the left, your left, this is an example of individual-level advocacy. The student helped their partners to purchase their first home.  They're getting the keys there to their home.  And the picture here on the bottom was a group of students and newcomers in the project who went to the state legislature to advocate for specific policy changes that were impacting newcomers.  So, these are just two examples.  Really, the focus is on whatever newcomers -- whatever their goals and unmet needs are, again, around housing, education, healthcare, legal issues, whatever they want to work on.

So, that's the basic structure of the RIWP.  And I also want to emphasize how this relates to the second critical question that I think we need to pose to ourselves, which is, how do we build on strengths and competencies and thinking about strengths of individuals, families, and communities, instead of employing a deficit perspective?  And by this, I think I really want to ask, how do we recognize people as experts on their own mental health and well-being?  How do we support the healing practices that communities and individuals already have?

And I acknowledge it can be really difficult to focus on strengths when we see many of the challenges that people are experiencing in their daily lives and the inequities that they're facing.  But I think that we really have to start with this idea of mutual learning and not think of it as, how do we help these poor vulnerable refugees?  You could fill in any example of a marginalized or under-resourced community there.  But instead, how do we create interventions that value people's knowledge and experiences, recognize their successful coping strategies, and see people as equal human beings?

Here I offer some ideas about strengths.  These are generalizations, but these apply to many under-resourced individuals and communities, not all, but just as a way to think about some of the things.  For example, collectivist orientations or structures that already exist within communities to collectively support the well-being of the whole community.  The importance of religious and spiritual and cultural practices for healing.  There is a lot that we can look at and build upon, especially when we recognize that most people experiencing mental health inequities have overcome a lot of challenges themselves.

I want to emphasize that focusing on people's strengths -- you know, it's not just a nice thing to do or a good way to sort of frame our efforts and focusing on people's humanity.  It has a really meaningful impact on their mental health and well-being.  And I want to share with you this quote from a participant in the RIWP, who said, "When we were in Tanzania, we were refugees there.  We were treated like we were second-class citizens, that we wouldn't share the same utensils as the people who were running the camp. 

"But we came here, and we realized we were treated like human beings.  For example, the students would come to the house and sit together and eat together and treat us like equals.  And so, we see with time, we are going to feel really at home here.  And so, I feel that humanity and dignity is really being noticed and upheld in America and people see us as people."

And I want to share a second quote here that also illustrates this.  This was a woman from Iraq in the program who said, "Definitely we learn a lot during this program.  We learn about the U.S. cultures and traditions and believe they learned the same things about our culture.  I believe we can say that this program helped us to build trust all together.  We feel we are no longer lost."

And this brings me to my third critical question, which really has multiple parts.  And it's, what do we count as evidence of intervention effectiveness?  Which methods do we see as rigorous?  And how do we even measure mental health and well-being?  And this really requires us -- and we've heard some talk about it today in terms of epistemic justice and standpoint perspectives.  But it really requires us to question our assumptions about what constitutes valid knowledge and to take seriously multiple and diverse perspectives on how to determine if mental health interventions are working.

And these are really huge questions, I know. So, I can't fully answer them here today.  But I want to start.  So, in terms of methodological approaches to testing intervention effectiveness, I'm really not here to undermine our emphasis on rigorous research.  Instead, I really want us to think more broadly about rigor.  And randomized control trials are important.  They provide us with useful information.  We conducted a randomized control trial of RIWP from 2013 to 2018.  That was funded by NIMHD.  And it was a successful trial.

But I also really want to challenge us to see, does this really tell us everything that we need to know and understand?  And does it provide evidence that's recognized and valued by all people?  One of the important things that we did in our RCT was that we collected both quantitative and qualitative data from all 290 participants in the RCT at four time points.  And this really allowed us to hear participants describe both their experiences in the intervention and the impacts of the intervention in their own words.

And I want to share with you -- I know this is a long quote here.  But this is an example of what we heard from one participant in the RCT that illuminates not only some about the impacts of the intervention, but also really vividly and painfully describes some of the multiple factors that were impacting her distress.

And she said, RIWP has changed my life completely.  Before I met my student advocate, I was suicidal.  I felt like I just want to die.  I wanted to kill myself.  When my daughter who died in a refugee camp, between her and the pregnancy, it was six months.  Then I got here with hope and everything.  And then I had a miscarriage.  I didn't have nobody to talk to.  They even took me to the hospital, and they would just have me tied.  They thought I was going to kill myself in the hospital because I was going mad.

"The program changed my life.  We have learned so many things.  The whole family was going through hard times.  We didn't have anything.  We were struggling financially, emotionally, everything.  The program helped us, especially our student advocate.  She helped my student -- or my husband to go to school.  And he was able to get his Certified Nursing Assistant certificate, which helped him to get the job that he's working now.  And it changed the whole family."  This is the kind of thing we wouldn't have heard if we didn't take the time to ask and really listen to people in their own words.

So, I think research in partnership with individuals and communities also helps us to think -- when we think about how we're measuring intervention effectiveness, to think critically about the measures of PTSD, depression, anxiety, and other measures of mental health and well-being.  Our research suggests that standardized measures of some of these disorders are not always the most accurate measures of distress and mental health. 

However, often, we're required by our funding sources to use certain measures that can preclude our use of other measures that might be more appropriate.  But due to efforts to reduce participant burden, constraints on our time and resources, we have to make really difficult choices.

So, I really -- again, I want to encourage us to look to the experts which are really the people themselves to best understand how distress and well-being are expressed.  And this requires a big epistemological shift.  It's easy to say that we need to do it, but to really put it into practice can be challenging.  But I think that it is really important.

So, based on asking those three critical questions, I want to end with sort of three principles.  These are not going to really sound new, because we've heard many speakers talk about them already this morning, but what I think about when I think about how we are going to achieve mental health equity. 

And so, starting with the first one, which is that we need to include people with lived experience as co-researchers, as full and equal partners in our research process.  Again, this is not a simple thing to do.  We really need to change both how we do our research and also mentorship, funding structures, all of these things have to transform.  But I'm going to talk about two key ways that we can do this.

So, first, again, not new today, but it's community-based participatory research, or CBPR, which involves partnering with individuals and communities and community-based organizations in equal partnership in all phases of mental health intervention research, from designing the studies, to choosing the outcome measures, implementing the intervention research, and also really importantly, analyzing the data and sharing the findings.

Sometimes we think our research is participatory if we engage in partnership in one or two of those aspects, but we really need to do all of them.  If we really want to take people's strengths seriously, then we realize that people experiencing distress and structural inequities know what questions to ask.  They know what is important to address in a mental intervention -- mental health intervention, and how to do address it.

So, you can see this example here, when we first wanted to adapt the RIWP model to work with Spanish-speaking, forcibly displaced people and immigrants from Latin America, we worked with these five community-based organizations to do this.  And I also really want to emphasize here that to have equal partnership in the research means dedicating equal funds and decision making to all the community-based organizations.  So, over $750,000 in this grant is directly given to our community partners, so they can fully participate in the research.

I think CBPR also raises the question -- which we've talked about today -- which is really community-led or community-driven research, where the funding goes directly to communities.  And I was really happy to see NIH do this with the ComPASS initiative that's been mentioned today. 

And I wanted to give another example here of one thing that we built out of the RIWP model, which was we developed a nonprofit organization called United Voices for Newcomer Rights, which is led and staffed by refugees and immigrants, the people who know best what their communities want and need and who have the linguistic and cultural competence to do this work and which also provides full-time, good-paying jobs to bilingual newcomers who are usually doing this work anyway in their communities, but often unpaid.

So, UVNR right now receives a lot of funding to implement programs, but also to implement its own research and research in partnership with those of us at the university.

Okay.  The second half of what I wanted to say about including people with lived experience as co-researchers is that we need to expand and transform our mentorship models.  And I know there was a question about this earlier of, how can we bring more people with lived experience into the workforce as mental health researchers?  And I think that this is really important.  And I appreciate also that the NIH has started relatively recently a new supplement to R01s, the Excellence in Diversity, Equity, Inclusion, and Accessibility Mentorship Award.  And we have one of these in our most recent R01 study.

And I want to talk about an innovation that we included in our grant here, which is not only that we have six mentees who are newcomers and children of newcomers who are graduate or undergraduate students, but we made the argument in our proposal that it's really important to include newcomers, children of newcomers, people with lived experience, as mentees who are not -- who have not had the opportunity to have that traditional pipeline, to go straight from undergraduate to graduate school to a faculty position. 

So, there's a lot of people working as staff in community-based organizations or in other jobs who want to go to medical school, who want to go to graduate school, who want to do this research in their communities.  And they haven't had the chance, and they don't have the time to volunteer on a research study.  So, we have, in our project, six mentees in that situation as well.

Okay.  So, I know I need to wrap it up.  I wanted to say the second principle really quickly, is that we are never going to achieve mental health equity if we don't have mental health interventions that people want, right?  Because we can have the best intervention in the world but if it's not what anybody wants, then we're not going to achieve an impact. 

And so, I wanted to highlight here that we know that rates of completion and engagement in many mental health interventions are pretty low.  In our RCT of the RIWP model, most people who we offered the intervention to wanted to participate, and 100 percent of people who started in the study completed the intervention.  So, I think this sort of universal non-stigmatizing approach is really important for people who are experiencing distress.

And finally, to help us develop interventions that really target these root causes of distress, we have to do research that looks at the mechanisms that explain that distress.  And you can just see, here are a few of the papers we published from the RCT that looked at the role of, for example, economic stressors, family separation, resource access, and their impact on mental health.  And spoiler alert for these papers, they play a really large and primary driving role in explaining the distress, which tells us that the really important areas at which to intervene.

And this research also helped us design the latest R01 that we have from NIMH, which involves testing the impacts of multiple layers of intervention on the disparate and negative mental health, economic, and daily stressor consequences of the COVID-19 pandemic on Latinx and African immigrants and refugees.  And we're following 600 people over a period of three years, seven time points.  So, we have a lot of data that's going to help us understand intervention effectiveness and these mechanisms.

So, in conclusion, I believe that we can achieve inclusive research with meaningful impacts in terms of mental health equity with sort of these guiding principles that I suggested, but that that really requires all of us to change.  So, we can't just expect the change to be in our research participants, in our patients, or our clients, but for those of us who are researchers, funders, and decision makers as well.  Thank you very much.

BENJAMIN COOK: All right.  I'm pressing buttons.

Any ideas?  Oh, here we go.  It's just slow.  That's, like, really slow.  Okay. There.  Great.  Well, thanks, you all.  Good morning.

MULTIPLE SPEAKERS: Good morning.

BENJAMIN COOK: Thanks a lot to Dr. Gordon, Dr. Borba, for the invitation to speak this.  I'm really thrilled to share the stage too with Dr. Goodkind and Dr. Hankerson, whose work I really admire.  I want to acknowledge NIMH for supporting my research, going back a long time until I was a pre-doctoral fellow.  So, that was a number of decades ago, unfortunately.

Today, I want to talk about policies that are kind of in the outer ring of the socio-ecological model, maybe a little more than some of the others -- healthcare policies, thinking about healthcare systems and how they change and the impact on mental health equity across racial and ethnic groups. You can also see in my title there that I was asked to talk a little bit about methods.  But I've taught enough methods classes to know that a lot of your eyes will glaze over.

So, I'll try and keep the regression models to a minimum in today's talk.  So, another thing to say about the title slide is Lê is my middle name, and that's my Vietnamese mother's maiden name.   Lê Thi Kim Oanh is her name.  And she -- so, I'm the son of a refugee.  And I really appreciate the whole day so far and thinking about what it is to be on the margins, what it is to be a refugee in this country.  She's a strong woman.  If Carlos' mom -- the Cuban mom and the Vietnamese mom get together, they would do some damage for sure.

She's a clinical social worker just down the road at the Vietnamese Resettlement Association in Falls Church, Virginia.  So that's -- you know, thinking about positionality, my work starts really with her writing grants at the VRA when I was in seventh and eighth grade and thinking about better ways of providing mental health treatment.  I also probably had been based positionally in my dad's work.  He was a senior executive of the Environmental Protection Agency, really influenced by John F. Kennedy to come into government work, believed in the effect of policy and what that can do.

And then lastly, I'm trained in health policy, so not a clinician, so a lot of work in -- a lot of training in healthcare economics and statistics and evaluation, but also did a master's at UNC in in Health Behavior and Health Education, so some training in CBPR.  And that intersection is where I'm based.  Okay, still not moving.

All right.  So, let me talk about three things in my time here.  So, first, I think it's useful to talk about what are the pressing inequities?  And here I'm talking about if we were to look across the country, what do we think of as the pressing inequities in mental health?  Or where is the public health impact for intervention the greatest?

And then I'll think -- talk a little bit about some healthcare policies that we've evaluated, and how they're working to eliminate or not eliminate disparities.  And then I'll get from that policy level to the healthcare system level -- and I'm from Cambridge Health Alliance, which is a safety net healthcare institution in Cambridge, Massachusetts -- and the kinds of reforms that are possible in learning health systems.

And so, I'll talk about some of the kinds of nationally representative data analysis.  That's the method I think is really useful.  There are survey data making claims about what is nationally representative. It's really important getting those methods right.  Causal inference methods, difference in differences, and propensity scores and things like that end up being really important for understanding whether a healthcare policy has worked.

And we are in the era of AI and big data, and it's coming to healthcare systems.  And so, navigating that world, I think, is going to be really important.  And getting the methods right for doing that is going to be really important.  Okay? So, those are the three points that I'll talk about.

So, first, the pressing inequity.  So, this goes back to a national survey of American life and NCS-R that were funded by -- this is going to take forever.  These were NIMH studies that were funded -- one didn't show up.  But the general idea here is that when you take a national sample, and you ask them questions -- so, not who made it into treatment, but you're doing a national sample of the folks in the community.

What you find is that, by race and ethnicity, they're actually very similar rates of depression, very similar rates of anxiety. Any mental health disorder, those rates are similar or lower for minoritized populations.  But where the disparity is, where the inequity is, is really in the persistence and the severity of those illnesses.  So, I think that's a really important distinction and has a lot to do with the kinds of treatment they receive, the kinds of stressors that they're put under when they do have a mental health challenge.

So, we -- this is going back to -- David Williams showed that.  And the other one that didn't show up, I apologize, was Ron Kessler's study, of the National Comorbidity Survey.  We kind of updated those 20-year-old studies and found that still we're finding that severity is worse for marginalized racial and ethnic backgrounds -- for people from marginalized racial and ethnic backgrounds.

So, here, it's really important to do that work to fund those nationally representative studies.  And I think that's something we don't say enough.  The Medical Expenditure Panel Survey, the National Survey of Drug Use and Health, the BRFSS, there are lots of these national studies that help us understand what is happening in the country and allow us to track disparities over time.  And continuing to advocate for funding for those is really important.  And then getting the methods right, how do we identify disparities in those large datasets, how do we get the survey data right, the survey statistics right, is really important.

Okay.  So, that's the first takeaway is persistence.  If you have depression or anxiety, racial and ethnic minoritized populations are much more likely to have it for longer, and it's more likely to be severe.  So, that's the first one.  But then what we know -- and this is from the MEPS data, the Medical Expenditure Panel data -- is that for Latinos and for African Americans, the rates of any mental health visit are much lower than Whites.  So, this is the second big inequity in our health system.  And we've talked about this a little bit.  But this is really an access problem.

And sorry, you can't see the X axis here, but the yellow bar is White individuals.  And they're about 60 percent, 40 percent for Black individuals, and a little over 40 percent for Latino individuals.  So, this -- to say it again, these are individuals with psychological distress.  So, as measured in the community, these are folks that are pretty severely distressed and impaired.  And less than half of Black and Latino folks with that kind of distress see -- get anything at all. 

So, even one antidepressant, and they go into -- they become a one in this analysis.  Just one visit with a primary care doctor where they talked about mental health, and that gets a one in this analysis.  So, that's less than half that are getting even that bare minimum of treatment.  And then if you look at Asian folks, that's even lower than 40 percent.  We also look at Native Americans, and they're actually in -- at rates higher than the other groups.  Okay?

All right.  So, that's the second one.  So, the first one, persistence and severity.  Second, there's real inequities and disparities in access to mental health treatment.  And then this is the third one.  And here you can see the rates of suicide.  And Dr. Gordon touched on this.  The rates of suicide are increasing for Black and Native American populations as well as Asian populations.  So, this is ages 10 to 24.  And you see these increasing rates, among a number of groups, on suicide.

Okay.  So, those are the three, I would say, real pressing inequities.  If we were to look across the country and say, what are the three things to go after with a huge public health significance, thinking about how we reduce persistence and severity inequities, thinking about how we reduce access disparities, and thinking about the how are we going to stunt the rising rates of suicide among Black, Asian, and Native American youth are just really important.

Okay.  So, what do we know about healthcare policies?  And here I'm talking about national state Medicaid, Medicare policies, the way that we organize healthcare.  And there are probably three or so big reforms over the last 10 years that the country has gone under, the Affordable Care Act being the biggest one.  It's still somehow in the news about whether we're going to keep the Affordable Care Act.  But expanding health insurance eligibility, it's actually 10 states -- Arkansas came online in 2021.  So, 10 states have yet to expand Medicaid eligibility.  Mostly in the South are the states where they haven't expanded, where Black and Latino communities stand to disproportionately benefit.

There's been a lot of work on parity, on cost sharing reductions to try and reduce out of pocket payments for individuals who are seeking mental healthcare.  There's also been a lot of work on reorganizing providers, reorganizing their payments, how they're paid, the contracts between payers and providers, the contracts between Medicaid and Medicare and those providers.

So, here, the results are that -- and here, again, interrupted time series, these causal methods are really important here. And what we know is that insurance coverage increased overall rates of mental health access, at least temporarily.  It dipped again in 2019.  But it's starting to come back but no differences in that -- that big disparity in treatment access, insurance eligibility didn't decrease that inequity.

We've evaluated Medicare shared savings plans. They really reorganized providers into accountable care organizations.  That initiative increased psychotropic medications, decreased outpatient treatment.  So, you can say that -- see there was a shift into psychotropic disparity prescriptions there.  No change in disparities.  So, the other set of that we did was to look at provider payment -- there it comes.  See?  Provider payment.  I didn't even --

Primary care docs, and they were given more money, but as part of ACA reform, decreased cost sharing.  So, a lot of ways in which the country has put a lot of resources, attention, and energy to changing payment, to changing copays.  It helped a little bit, again, with psychotropic medications, but no change in disparity.  So, really, kind of Dr. Shim's picture of the putting two ladders up to a really imbalanced apple tree, a lot of these reforms that we've done over the last 10 years and spent a lot of resources and energy on have not reduced inequities at all.

So, there's a lot of folks now interested in equity incentives, incentivizing the payers to do a better job at reducing disparities as opposed to just increasing mental healthcare use.  In Massachusetts, there's interest in incentivizing providers to risk-adjust for social factors.  And so, there's going to be a lot here coming online that needs proper evaluation to see whether it's going to work or not to incentivize providers to reduce disparities. And focusing on readmissions, depression treatment, screening, and quality of mental healthcare is something that people are focusing on, and access to mental healthcare will be a part of that.

Some other reforms that are on the way as task shifting, task sharing, peer support, integrating peer support, and really understanding that work and how it's working at Medicaid and Medicaid plans around the country is going to be important.  Single-session interventions might be a way to reduce the burden on some providers.  Those are showing some promise.  And then thinking about social programs and what that does for mental health care disparities, food, housing, income transfer, these are interventions that we -- that are going to be deployed by private payers, by Medicaid, and by Medicare.  And we need to evaluate those.

Okay.  So, thinking now -- going from the Medicaid-Medicare insurance level, those policies that have been -- the reforms that have been happening, now to thinking about healthcare systems and what we can do at places like Cambridge Health Alliance.  And now, I think we need to -- and this kind of gets back to our theme is, the health systems are not doing a great job at listening to the patients that are going to their healthcare system.  So, orienting reform around elevating their voices is going to be really important.

There's a lack of trust.  There's concern over the effectiveness of providers.  We've done a lot of work here talking to folks about their experiences.  We've been focused quite a bit on suicide and thinking about the importance of getting people into treatment in order to prevent suicide.  But a lot of families, a lot of parents are worried that Cambridge Health Alliance and other healthcare systems aren't safe spaces.  They're concerned that they're going to be -- there's going to be a mandatory reporter.  Their concern is going to be law enforcement involvement if somebody reports. "Our kids are met with policing, not protection," was a quote,

Parents think when you're asking about their kids' mental health, you're really asking about their parenting.  And for Vietnamese, that is the grandparents parenting and the great grandparents and the people we worship at the altar every Tet.  It's multiple generations that are being accused if you find out that there's somebody in your family, a kid who's having trouble.  So, thinking about that as we're developing health system interventions.

"Clinicians treating youth of color do not lack the will, they lack the skill.  You wouldn't go to a cardiologist to fix kidney disease."  Intergenerational transmission of racism ends up being a very big deal for a lot of the parents and the kids that we talk to.  And clinicians, when they hear that, will often back away from that clinical encounter and ask somebody else to take it. And that's after a long time and a lot of work in getting that kid or the family to a provider.  And now that provider is saying, "I'm not equipped to deal with things like intergenerational racism."  And so, that's what this parent was saying.  They just lacked the skill, and they need to be trained in how to deal with things like intergenerational racism and its impact on their folks.

We've talked a lot to folks about access.  And so, just three simple questions, what attracts you to mental health care, what doesn't attract, and what keeps?  And you can see a lot of the themes that came up. What attracts is being heard and seen.  What doesn't attract is a lack of cultural responsiveness.  And what keeps is being comfortable and safe.  So, bringing the healthcare system along with some of these ideas, training providers, making the healthcare system a place that feels more culturally responsive and comfortable and safe, is really important here.

So, thinking some more about that, building trust with community leaders, linking to peer movements, engaging stakeholders across symptom -- systems, health, criminal, legal, child protective services. It's been a real surprise to us -- and maybe this won't be a surprise to you all -- how important child protective services are for parents, important not in a good way.  The threat of their being separated from their child is so huge for them.  And I think this resonates with some of Dr. Goodkind's work that that family separation is such a traumatic event that lasts for a long time. 

And so, we're finding that child protective services -- it's called DYS -- ends up being one of the most if not the most significant predictors of suicide in our healthcare system.  Thinking about rapid risk assessment in schools and the community, there are computer adaptive tests that are really quick to get to identifying whether someone has real risk for suicide and mental health disorders using big database, predictive analytics.  And then creating other interventions that help to ease provider supply shortages are things that we can do in the healthcare system, including incorporating peers, peer only for some people with lower risk, if that's possible, cash transfer, single session interventions.

All right.  So, maybe I'll -- my last slide, I think, is on this, the promise and peril of big data analytics.  So, this is what is coming.  There is going -- there are a lot of predictive tools.  Epic is making a fortune off of predicting whether someone is fill in the blank, suicidal, going to be re-hospitalized, whatever is being incentivized by Medicare and Medicaid.  And so, there's a lot of work here on predictive analytics.

So, if we -- so, to walk through that, screening is -- a lot of it is going to be computer adaptive now in healthcare systems. Predictive analytics are going to get high-risk groups into certain more comprehensive care or not.  And there are kind of famous studies that show that African Americans, because they aren't in the health care system, are less likely to get these comprehensive services.  So, in addition to that, identifying successful treatment regimes to make decision tools is coming.  And there are SMART trials that are starting to do this.

So, you just go a few days.  You get a computer adaptive test.  And then you decide whether you need to change trials or change the therapy that you're having.  And so, you can see all these branches here are indicative of the ways in which AI is going to be changing the therapies that people receive on the fly. And there's been a lot of great work in identifying these treatment regimes and doing these SMART trials.

But this is really where the community needs to step in, and researchers like ourselves need to do a better job of identifying and mitigating the bias and these models.  This is screening, treatment, sequential adaptive treatment. Those are all going to be AI driven.  And it's going to be really important to make sure that the data they're using is representative of all the patients that we care about that we're interested in that are in our healthcare systems, as well as co-designing these adaptive trials and what that looks like so that they're acceptable, anti-racist, and relevant.

Okay.  So, just to summarize, keeping track of disparities and severity and persistence in mental health treatment, to see whether we make any progress on those inequities, and suicide risk as well is really important.  That takes good nationally representative data.  That takes good survey statistics.  That takes a good understanding of the measures that we're using in those national datasets.  Identifying upstream social determinants of health and healthcare reforms that create equity and then co-designing SMART trials and interventions, using the big data that's going to be used in a lot of our healthcare systems.  And I'll stop there.

This is the -- some of the folks from -- that I work with and my colleagues.  And really, our work is generated by all of all of their work.  We were able to get some people to duckpin bowl, which is a thing in Massachusetts, if you've never done that.  And some of them are actually -- went away from their virtual environment and -- to duckpin bowl with us.  And then some references here in case you want to look at those.  And I'll stop there but thank you for your attention.

SIDNEY HANKERSON: Make sure this is -- okay.  So, good afternoon, everyone.  I said, good afternoon, everyone.

MULTIPLE SPEAKERS: Good afternoon.

SIDNEY HANKERSON: I know you all may be thinking about lunch --

-- but I thought that in the spirit and tradition of the Black church, which is the community-based organization that I'm partnering and presenting today, I thought we'd start with a little call and response.

So first, I'd just like to say thank you.  Thank you, Dr. Gordon, just for your leadership and -- over the years and making this forum a reality.  I want to thank Miss Sofia Davis and her team for all of the logistics of putting this conference together.  I want to give a shout-out to my NIMH program officers, Lauren Hill for my K award, Mike Freed from my R01, and Aileen who is my serve, standing service committee leader.  And want to thank Christina for moderating our session and then just leaders from Mount Sinai and Columbia that make this work possible.

I'd like to first start with an icebreaker.  If everyone could please turn to your neighbor and share with them the story of your name.  So, Ben, you did a wonderful job modeling this by describing your mom and your name.  So, please share with your neighbor, who named you, what your name means, and how your culture has influenced the meaning of your name.  And then you can switch.  You can begin.

All right, about 30 more seconds.

All right, if we could bring it back together. So, thank you all for participating in that.  I know some of you have heard this exercise before, done it before.  And if that's the case, then I hope you shared something new with your neighbor that maybe you shared before.  For those of you who didn't, the reason that I like to start with this exercise is that I do think that it can build community.  And I think that allows you to talk a little bit about your family history and shows how your family's history can impact your present reality, whether or not you consciously think about it.

And so, because you all were gracious enough to participate in that exercise, I'd like to briefly share with you the story of my name.  So, my full name is Sidney Herbert Hankerson III.  Don't laugh at the Herbert.  But some of you did anyway.

But the story of my name is really the story of the Jim Crow South.  And I'm just going to share a little bit about the story of my mother's side of my family.  So, Sidney literally means south of the water.  But my mother's side of the family traces back to a small town in South Carolina.  My grandfather, who was a man that I spent practically every summer with, was a farmer.  And at the time that my grandfather was employed as a farmer, Black adults were banned from shopping in grocery stores.  So, as you can imagine, the access to health -- healthy foods was extremely limited.

And so, my granddad actually petitioned Clemson University and was eventually employed by Clemson University to teach Black adults how to farm the land.  And I remember him taking me to the farmers market, which was the place where other Black farmers that he trained, learned how to sell -- sold their produce.  And the farmers market ended up being this huge community setting where people traded their stories, they sold food, and they made a living.

My granddad was also a deacon at his church.  And that was also a place that impacted me on a very personal level, and I saw the power of community.  So, my granddad and my grandmother had seven children.  And the time that my mother, who was the oldest of those seven children, was born, at the time that she was born, Black adults were banned from delivering babies in hospitals.  So, as you can imagine, the rates of infant mortality were extremely high because of lack of access to healthcare during the prenatal period.  And that impacted my family as well.  Three of my grandmother's children died before they were six months old.

And so, that impact of structural level policies or limiting access to healthcare or foods, really has impacted me on a very profound and personal level.  And so, that is what I bring to the work.  And that is the story of my name.  So, with that, I would like to have us think about the story, the celebration that we're here to celebrate and where -- we see the tagline of research, discovery, and hope.  And over the 75 years of NIMH that we are here to celebrate, we certainly had been astounded by the groundbreaking innovations that have been made in research, discoveries, and the hope that our treatments have been able to provide patients.

But we also have to acknowledge the other side of this story.  The fact that the process of research has been tainted, as Dr. Shim so eloquently pointed out, with structural racism, that the process of discovery has left a distrust in many communities.  And the notion of hope has also had a cost of causing harm.  And so, the story I'd like to tell today is a story that my panelists have really done a wonderful job painting different pictures of, is really a story of rigorous community-engaged research.

So, during our time together, I've divided this talk into kind of three chapters.  So, one is inequities in depression care, then talk about some of the work about partnering with faith-based organizations, and then really leave you with a story of community-based leadership.  So, Ben really laid out -- and I'm briefly going to go through this.  You know, there's a very complex relationship as it relates to depression -- which is the clinical condition that I research -- and race.

So, there's -- in the literature, there's this notion of a depression paradox.  Although African Americans are exposed to more risk factors that would increase the odds of becoming depressed, as has been mentioned, African Americans have lower rates of lifetime depression or similar -- or lower rates of 12-month depression.  However, the real difference is in the disability associated with depression.

So, this data is actually from the survey that Dr. Lê Cook mentioned in terms of the national survey of African -- of American life that looked at differences in depression between White and Black adults in the United States.  And you see that African Americans with depression are more impaired in nearly every domain that was assessed, in terms of work relationships, social functioning, and an overall impairment.  So, depression in African Americans is more impairing.

And then one of the first studies that I did, replicated the finding that we know too well, is that African American adults are less likely to receive any type of treatment.  So, this data is from the National Epidemiological Survey on Alcohol and Related Conditions.  It's a nationally representative survey that looked at 8200 Black adults and 24,000 White adults in the United States.  And we see that Black adults were nearly half as likely to receive any type of treatment, including psychotropic medications, including psychotherapy, but were nearly two times as likely to be hospitalized, showing really the high rates of hospitalization for depression in community settings.

And so, that led me to think of how can we kind of think outside of the traditional kind of formal mental health settings and engage people where they may be more likely to receive mental health care?  And that led to some of the work in partnering with faith-based organizations.

So, nearly 20 -- over 20 years ago, a really groundbreaking paper came out with data from the National Comorbidity Survey Replication, which asked people across the United States, "When you are first experiencing a mental health crisis, where do you go get help?"  And regardless of a person's racial or ethnic background or their religious affiliation, the first group that people said they seek help from was mental health professionals, which was defined as social workers or psychologists. 

The second group was clergy.  So, our pastors, our rabbis, our imams are really frontline -- our spiritual leaders -- are frontline mental health professionals. People seek help from clergy more often, initially, than they do from their primary care doctor or from psychiatrists.  And the role of clergy is especially significant in the African American community. 

African Americans, by virtually every measure that is used, are considered the most religious group in the United States.  87 percent belong to a religious group.  You can see the other result -- other data here.  And while across the country, rates of church and attendance at religious services has declined since the pandemic.  The rate of decline has been slowest among African Americans, highlighting the significance of the church in the Black community. 

And I think it's important to note that in this country today, you know, roughly 187 Americans identify with a particular religious group.  So, the public health significance of engaging faith-based organizations to address mental health needs is vast and is truly significant.  And so, what I did was to try to see if it was possible to engage faith-based organizations in providing mental healthcare.

So, we conducted focus groups with 21 pastors from a large church.  You see their demographics here.  This was a highly educated group of pastors, nearly 90 percent had a master's degree or higher.  This was from a very large church in New York City.  And it was the African Methodist Episcopal denomination.

And so, I just want to highlight two of the quotes that emerged from these focus groups.  You know, one of the pastors said, you know, "As African Americans, we just never get help.  We think that counseling is not for us."  So, that this notion that kind of the traditional mental health system was harmful, again, to African Americans. 

And then another pastor really highlighted the importance of partnerships that has really grounded my research.  You know, they really talked about forming real partnerships, durable partnerships, and didn't want to be considered or used as guinea pigs, which was, in their mind, a reference to the Tuskegee study.

And what's not included on this quote is that, you know, the pastors, after the focus groups, came up to me and said -- you know, he put his hand on my shoulder, and he said, "You know, Dr. Hankerson, you seem like a nice guy."

"But," he said, "you and Columbia aren't going to come in here --" I was at Columbia at the time.  He said, "You're only going to come in here, do a study, and then leave, without telling us about the results, without creating something that's durable for this to have any chance of succeeding."  And so, I took that conversation as -- I took it to heart and really leveraged that kind of process of partnerships and wanting to create something durable and was connected with Dr. Ken Wells and Dr. Loretta Jones of UCLA.

And they had developed a derivative of community-based participatory research, and they called it community-partnered participatory research.  And this is a manualized, it's an evidence-based model of community engagement that has been proven effective in multiple clinical trials.  And you see kind of the four pillars of community-partner engagement here.  And this method of community-engaged research has been shown to increase participation of people of color in research, to increase trust, to build capacity of the target community-based organizations, and importantly, in terms of clinical outcomes, to reduce disparities, right?  So, people are getting care when using methods of community-partnered participatory research.

And so, using that methodology, I, in partnership with one of the pastors from the focus group study, we conducted, to our knowledge, the first church-based study where we used a validated instrument to screen people for depression.  And the screening instrument that we used is the Patient Health Questionnaire-9.

And we screened at three different churches in New York City and different boroughs, so one church in Harlem, one church in Brooklyn, and one church in Queens.  And across these three churches, we screened 122 people.  44 percent of the sample were men.  So, we were able to recruit a high -- relatively high percentage of men, and the average age of our participants was 54 years old.

And so, next slide, I just want to show kind of the demographics of the sample.  You see a wide range of participants, you know, attended the church.  And this really just gives a snapshot of the power of community-based organizations in that, you know, it can reach everyone across the socioeconomic spectrum.  And so, what were the findings?  I'm so glad you asked.

So, we found that there were very high rates of depression.  You know, prior to, you know, us publishing this study, there was a study done in New York City at federally qualified health centers and showed that in these federally qualified health centers, using the PHQ-9, the positive rate of depression, using a cutoff score of 10, which was what we used, the rate of depression was 19 percent.  And we found equivalent rates of depression in these three different churches, so very, very high rates of depression with the PHQ-9.

Another important founding -- finding was that, although not statistically significant, there was a higher prevalence of depression in men than in women.  And in virtually every epidemiological survey that you see across the world, women have two times the rate of depression than men.  But when we engaged men and health ministry programs, and we had health screening programs specifically catered to and tailored towards men, the men told us they felt safe, to be honest, about their responses on the survey.  And we found higher rates of depression in men.

And so, that really provided and showed that there were tremendous needs, you know, in these settings.  And then we really wanted to kind of think of, what could be the bridge to getting people connected to care?  And that led us to our work currently with community health workers.  So, you know, shortly after, you know, we published a paper on the high rates of depression screening.

NIMH, you know, released this funding opportunity that was focused on increasing the uptake of evidence-based screening in diverse populations.  And the focus of this, you know, funding opportunity was really to investigate strategies to reduce disparities by promoting the uptake of these screenings.  And the key knowledge gap that that they wanted investigators to find was strategies for linking, you know, church-based depression screening to engagement with clinical providers.  So, that's the key knowledge gap that we defined, you know, in our proposal.

And so, we -- you know, at the time, I was at Columbia University, and I was co-director of the Columbia University Center for Community Health.  And this center is really rooted on three pillars.  One is to build capacity.  And to your question earlier about workforce, you know, we have developed this workforce training program through the use of community health workers.  You see, one of the cohorts of our community health workers here.  It's also focused on addressing health disparities, and it leverages community-partnered engagement.

And you see the symbol there, InTOuCH .  It was originally called the Institute for Training, Outreach and Community Health at Columbia's Wellness Center.  But it has grown, and it has become the Columbia University Center for Community Health.  And at the time, myself and Dr. Olajide Williams -- I do want to acknowledge him -- his role in co-directing the center.

And so, for our R01, we wanted to leverage our community health workers to see if they could be the bridge between depression screenings and connecting people to care.  So, this is a cluster randomized controlled trial involving 30 Black churches across New York City and in Westchester County. 

And the overall goal was really to compare the effectiveness of screening, brief intervention -- and the brief intervention that we're using is motivational interviewing.  And so, screening, brief intervention, and referral to treatment, or SBIRT -- and so, you may know SBIRT as it relates to alcohol use, but SBIRT has actually been used for depression as well -- and comparing this to enhanced usual care on treatment engagement.

And so, you know, like many studies, this was funded in June 2020.  And the churches were closed.  So, we had to rethink our funding strategy.  So, I just want to briefly highlight how the community health workers came up with an idea to recruit people for the study.  And then we'll wrap up.

[video presentation]

[music playing]

ACTOR: I'm so glad I got to see you all today.   Ever since I lost my job, I've been really down, with the bills piling up.  And, you know, I've been taking care of mom.  And other than that, I barely get to see anybody.

ACTOR: Well, I'm just glad you decided to get out of bed today and join us.  God does answer prayers.

ACTOR: You know, that sounds a lot like what I went through.  Have you tried speaking with someone?

ACTOR: I will you.  You know, I'm just doing the job search and making sure ma's okay.  I've just been really, really tired.

ACTOR: When I was down, Pastor told me about a study called TRIUMPH.  They have community health workers who work with those who are down, stressed out, overwhelmed, having trouble eating or sleeping.  And with everything going on, it was a godsend.  Between the Lord, TRIUMPH, and me, baby, we've got you covered.  Hallelujah.

ACTOR: [laughs]

JESSE WILLIAMS: If you are a part of the Black church community in New York City, I want to personally encourage you to become involved in the TRIUMPH study.  If you've been experiencing any stress or anxiety or depression as a result of what's happening in our lives in this present day, please seek out the TRIUMPH study. Call the number and get involved.

[music playing]

[end of video]

SIDNEY HANKERSON: Okay.  Now I can push -- okay.  So, in closing -- let me just jump to the end.  But my -- there we go.  So, I can't emphasize enough that the community health workers came up with the idea to do that video.  They also came up with the idea, based off of anecdotal and interviews with participants who are suffering but who are not meeting the cutoff criteria of a PHQ-9 greater than 10.

So, we actually submitted a formal change of scope letter to NIMH, who -- to justify actually lowering the PHQ-9 criteria to between greater than five.  And we currently -- since that change happened, we have enrolled more people who have a PHQ-9 score between 5 and 9 than those who have a PHQ between 10 and above.  And so, really leveraging the expertise and the insights that community health workers can bring, has really driven our story.

So, I'll close with -- you know, we started off with the story of your name, sharing the story of your name, and talking about, you know, the last 75 years of NIH.  I'll close with asking everyone to think about, what will be our story over the next 75 years.  I think that the most important thing is to emphasize the fact that rigorous science can and must be done with intense community input and community partnerships. And with that, I encourage all of you to think about what will be your role in shaping the next 75 years of NIMH?  Thank you.

CHRISTINA BORBA: This is working?  Yes.  Thank you for what an amazing panel too, we just had.  I have a notebook full of questions.  But I also want to be very thoughtful to our audience and our virtual audience as well.  But I will get us started.  So, thinking about the next 75 years, what is one of the essential things NIMH could do to really think about the future of research funding that's equitable, just, rigorous, but continues this work with our communities?  What is your call to NIMH for the next 75 years?  So, I'm going to take your question, and then I'm going to ask you it.

SIDNEY HANKERSON: So, I just want to highlight the ComPASS program which is really -- I think, embodies the spirit of community-based participatory research.  And the ComPASS Program is a program that gives the money primarily to the community-based organization for 10 years, which is a tremendous amount of time to -- and forces the organization to think about structural level interventions and bring together key stakeholders, right?

And so, one of my very first community-based organizations that I partnered with during my K award is an organization called Harlem Congregations for Community Improvement, which is a coalition of over 90 churches and mosques in northern Manhattan.  They actually applied for that award.  And though they didn't get it, the process of grant writing and having to do that increased their capacity, and they have gotten several other large grants as a result of that.  So, I think expanding access to those types of programs would be invaluable.

JESSICA GOODKIND: I think I totally agree with that.  And I think also, one thing that I mentioned in my talk, but I do think is important is thinking about requirements for fundings around how we're measuring distress is really important.  And also, I think also considering longer grants, kind of like ComPASS, but grants that, you know -- to do community-engaged research takes years and years.  And, of course, we can keep reapplying for the funding, but building that trust and community partners knowing that this -- there's a long term-investment in this work, I think, would also be really helpful.

BENJAMIN COOK: I agree with both of those sentiments and just want to reiterate what was said before about this being more than gift cards. I think that was such a good line.

Thank you.  This is more than gift cards.  You know, in a PCORI project that we did, we partnered with a transformation center, who is a group with lived experience in Boston that's been advocates for peer support -- certified peer specialists in Massachusetts for a long time.  And it was a real difference to work with that organization that had an infrastructure, that had power in their own right, that had funding in their own right.

And they were pushing back on us constantly from a position of power.  They didn't need our gift cards.  It was helpful for them to have the PCORI money that we -- they were giving to us but -- that PCORI was giving to them.  But what was really important was that they were on a strong foundation.  And they could be a good backboard for us.  And that was new for us.  We had to adapt to that.  But it was so important.  It changed the way that we did our research in a kind of fundamental way.

CHRISTINA BORBA: Great.  Thank you. I'm looking at both sides.  Make sure I'm not missing anyone.  Oh, hello [laughs].

AUDIENCE PARTICIPANT: Dr. Borba, thank you --

CHRISTINA BORBA: You're welcome.

AUDIENCE PARTICIPANT: -- for the moderation.  And thank you so much.  I mean, as I said earlier, I mean, light bulbs are just going off and on and off and on this entire time.  But I'm very curious about your succession plans as brilliant researcher, educators, researchers-educators, policy advocates.  I am  constantly thinking about, what are we leaving for the next generation?  And so as far as I'm concerned, if they have mentors like you, they probably would have a lot more options to be thinking about.

I'm a Pacific Islander woman.  I'm one of very few in academia.  And so, the mentorship is overwhelming.  It's really overwhelming.  When you're the only person, everybody is saying, "Ask her. Ask her.  Ask her."  So, my succession plan has been, train more people.  I guess that's what we need to do.  But I'm curious about yours.  What is your succession planning?

JESSICA GOODKIND: Okay.  Well, I can add a little bit more to the mentorship supplement that we have right now.  So, one of the things that I think is really helpful is team-based mentorship so that there are multiple mentors, multiple mentees.  But also, beyond that, that really, just as I was talking about in our interventions, this idea of mutual learning, we really see mentorship that way, too.  So, it's very multidirectional -- bidirectional learning.

And on our mentorship teams, for example, we have faculty.  We have grad students.  We have community partners.  And the grad students -- some of the grad students on our team realized some of our community partners and other staff needed more time and more mentorship.  So, they really took the lead in that.  And so, seeing that get built in this more iterative process, I think, is really important and doesn't leave the onus on one person or one mentor to do that work.

And I also think that, you know, all of you here who work for -- with grad students and undergrads know, they are really pushing us forward.  They are pushing all of this work forward in really important ways, and we're learning from them every day.  So, I think not just our community partners but our students, like really listening, really, really listening and hearing what they see that needs to change in the structures of the way that we do research, the way that we value knowledge, those are all really important.

SIDNEY HANKERSON: Sure.  So, I'll answer it on two levels.  I think on one, in terms of our community health workers, we're thinking about leaving -- we're thinking about sustainability.  So, you know, our community health workers, we were insistent on them making a living wage.  They make $32 an hour.  They're part time employees of Columbia University and have all access to the professional development and growth opportunities that the university offers.  So, that's one.

And then in addition, you know, we're beginning to work with the New York State Office of Mental Health and Medicaid around reimbursement.  SBIRT is a reimbursable service for Medicaid.  And so, you know, our next, hopefully, grant would be to do a comparative analysis, right, a cost effectiveness analysis of SBIRT, if it's effective, and see -- to build a business model, so how that could be sustained.  And then for investigators, just trying to, you know, mentor the next generation of kind of health equity investigators who utilize principles of community-engaged research.

BENJAMIN COOK: Yeah.  I think I'd say similar things related to my experience there.  It's hard for me to think about a succession plan.  That makes me feel like [laughs] I need to retire soon or something --

-- which maybe I should.  But I totally agree, I think we all have a duty to tell our institutions to invest in training.  And so, when we negotiate discretionary packages or whatever additional funds we get or if we're using the ComPASS study or other NIH funding, we have to build in funds to pay for internships.  And so, we have yearlong internship, summer internships, from high school all the way to junior faculty, to try and get people engaged in our research.

But the flip side of what you're saying, though, is that now we have 30 people floating around at different institutions, and how do you manage that?  And I don't know if we figured that out.  But spreading the spreading that mentorship and growing the pipeline enough so that others become good or better mentors, I think, is really important.  It's such a good question.

CHRISTINA BORBA: Go ahead.

AUDIENCE PARTICIPANT: Great panel.  I really enjoyed your presentations.  I really want to reinforce -- who said the thing about returning back to the community and giving the community the results?  Was that you, Dr. Hankerson?  I think that is so critical.  Because when I talked to those 1100 people and collected the data about what they want in the community, when we came back to give them their findings, they were like saying, "Nobody has ever come back to tell us the results.  And this makes us so mad, Dr. [unintelligible], that nobody really takes the time to think we want to hear the results."  So, I empower you.  What is -- that is really important step to give it right back to the people who talked to you.  Because then that's trust.  That's building capacity.  That's building your team.  You can come back now because now we know you care.

But I want to ask you a question.  I really like your model that you're doing with the churches.  And I'm doing something with 12 Baptist churches now, around cancer.  And so, what we did is hire faith health ambassadors, one person from each of the churches, to work with us to be able to do cancer conversations in the church, pop-up tables, and information around cancer.  But we don't train them to give the real information about cancer.  They have to refer them to our cancer care companion for information about screening and treatment at clinical trials.

And so, my question to you is, are you training your community health workers to give information to -- about not just recruitment, but about depression and training them around the issues?  Or are they connecting them -- referring them to services?  Because then that will help me determine if I need to give more training to our faith health ambassadors.

SIDNEY HANKERSON: Yeah.  So, we are actually training them.  They are the interventionists in this study.  So, they are providing motivational interviewing.  And then they are trained and registered with the New York State Office of Health to be able to serve as patient navigators.  So, they connect people to care.  They're also New York state enrollment -- health insurance enrollment officers.  So, for people who are uninsured, they can enroll people into health insurance panels and then do that step of connecting them to formal care.  So, they're actually the interventionists in this study.

AUDIENCE PARTICIPANT: I'm loving the model.  All right.  We're going to be sharing one's information.  Now, that's capacity building.  And that's giving back to the community.  And that's sustainability.  So, that's really critical to how we work with partners.  So, thank you very much.

CHRISTINA BORBA: Dr. Gordon?

JOSHUA GORDON: Thank you for the wonderful talks and these great responses so far.  There is a perceived tension, often, between trying to advance knowledge about mental illness, per se, and some of the foci of interventions, where you're, you know, connecting people with peers or with community health workers or with student advocates, right, and where the focus, the initial focus anyway, where the acute focus of the intervention is not on depression symptoms, but is on job applications or services that can be offered or connecting people with communities.

You clearly have navigated that, the three of you anyway.  But it is a tension in the field.  And I just wonder if you might speak to how that tension has influenced your work and how you've advocated for the importance of these interventions that are a little bit more, what, upstream or a little bit more maybe farsighted in a good way, in your own work.

JESSICA GOODKIND: So, I can talk about that.  When I first brought the Refugee and Immigrant Well-Being Project model to New Mexico, I remember being in a room with the state refugee coordinator who said -- you know, who knew what we were doing.  We've been doing it for a year or two.  And he said, "Well, that's not -- it's not a mental health intervention."  You know, and we kind of had this debate about that [laughs].  I was saying, "Yes, it is."

And what I would say about that tension is that I also think that it's what relates to really engaging people as well.  Because we don't -- when we talk to community members who may want to participate in a study or in the intervention, we don't frame it as a mental health intervention, because we acknowledge that in many under-resourced and marginalized communities, everyone is facing multiple stressors and often have high rates of distress.  So, we don't need to necessarily frame it that way.

But I think being able to then create a space where we can talk about that, right, so much of it is building that trust and engaging people.  And I will tell you, in our learning circles, for example, we always have topics on mental health, but they come from people who want to bring that up.  And then we talk about it.  And when people are asking to have that -- to have those discussions, to hear each other and then be connected with other resources, that's when I think it works the best.  And then I think the other thing is just doing the rigorous studies that show that we are having an impact on mental health outcomes.

BENJAMIN COOK: In a way, where a lot of what we're doing -- and this is maybe partly what you're saying, Dr. Gordon -- is we're in search of these putative mechanisms that we can intervene on.  And we're trying to target those and identifying those mechanisms.  And maybe linking with peers and community health workers helps us get to that in our research studies.  But I think we've tried to make the connections that you make with other people, the putative mechanism.

I mean, that -- you can see people light up. You see people come out of their shell. You see -- when they're in -- with peers, and they're -- when they're in groups talking about their experiences of, finally, I have a setting now where I can talk about what's been bottled up for a long time with people who won't judge me, with others who have been through something like what I've been through.  And so, just thinking about that as a putative mechanism, I don't think we've written a grant application like this before, but --

-- but it's worth doing.  I mean, the number of contacts that you have, the quality of those contacts, the ways in which there's support, the ways in which there's resonance, the ways in which there's feeling -- being  -- feeling heard, that seems like as good a putative mechanism as the ones that are being studied.

SIDNEY HANKERSON: Yeah.  I completely agree with both of those.  And I think one of the things that we're -- our community health workers have struggled with is that, you know, certainly in the intervention arm, they're limited to, you know, five sessions with the participants.  And after those five sessions, even sometimes after being connected to care, they -- the participant will reach back out to the community health worker and say, "Well, I still want to talk to you.  Let me tell you how the session went."

And so, I think we're documenting all of that and reinforcing, "Hey", you know, like, kind of got to set those boundaries and encourage the person to form the relationship with a therapist, but I do think it speaks to the point of the next step is really identifying the mechanisms by which these task-shifting interventions work. 

We've been fortunate because the New York City Department of Health has been very supportive of kind of task-shifting and peer-based approaches.  And so, I think that they're putting a lot of resources, you know, into this now.  So, we've been fortunate to kind of wide -- ride that wave, you know, with this.

JOSHUA GORDON: Thank you.

AUDIENCE PARTICIPANT: Thank you for a very interesting presentation.  I just wondered; you haven't ever mentioned anything about ages.  And I've been aware lately of the different generations, which I barely understand.  But there's a very big difference from one generation to another.  And I operate a helpline, and we're getting calls from older people, from 60, 65, 70, who suddenly are depressed with changes in life and so on.  And I wonder, are you addressing the disparity in ages and generations in your outreach efforts and services?

SIDNEY HANKERSON: So, I can start.  So, yes, I would say that -- so, for our study, it's 18 years and above. And the demographics of the Black church in particular have shifted.  So, it's now more adults who are more 60-plus.  That's kind of the average age of folks in our study, 60 to 65.  And we realize that we've had a harder time -- and so, with that, a lot of those adults are struggling with grief from losing loved ones from COVID, right, that they never addressed.  Because it's -- you know, New York City was so hard-hit by COVID, that a lot of them are struggling with unresolved grief.  And that's what's really bringing them into the into the trial.

But for younger adults and really to address suicide, I've moved outside of the church.  So, I have a study now that is engaging youth between 13 to 19, through YMCA basketball leagues and using that as the point of engagement, to engage them in an evidence-based kind of suicide prevention intervention. 

So, I think it really goes back to what, you know, Dr. Beidas said earlier about really thinking about, what are the community touchpoints where people are?  Where do they feel safe?  Where do they naturally congregate?  And having conversations with how -- what are your pain points?  What do people need, and trying to serve those needs, you know, in that way.

AUDIENCE PARTICIPANT:  Thank you.

BENJAMIN COOK: I would second that.  I have two teenagers at home, who I don't understand where they get their information.

And I have a mother, who I mentioned, who calls me every day and asks me to print out her emails.

So, just to say, I think it's really important to target, based -- get to where they are, walk in their shoes, and use that in order to identify the ways to reach out to people.

JESSICA GOODKIND: And I'd just add to that, that I also actually think that we can -- that one of the most effective mental health interventions that I co-designed with an Indigenous community I partnered with was an intergenerational intervention that brought together elders and youth around the land.  And the elders identified places of cultural and historical significance in the community.  And then the youth and elders went together and took photos of the places, mapped out the GPS coordinates, and then the elders gave narratives about the places and created a book.

And what we saw -- I mean, there's a lot we could say about that intervention.  But that connection with the elders feeling like the youth wanted to hear from them and cared about their knowledge and experience, again, it's about really valuing that.  And then the kids, the youth, they really felt like, wow, these elders are seeing me as someone who does have skills and who is a good person, and it's not just out goofing around.  And that intergenerational connection had -- we found, had a big impact on people's mental health, too.

AUDIENCE PARTICIPANT: Thank you.

CHRISTINA BORBA: Thank you again for a really, really engaging discussion.  I have a very important lunch announcement.

Is that -- oh, I thought I heard another question. And I'm going to read it verbatim, so I don't get the instructions incorrect.  So, we will now take a break for lunch.  All participants are invited to enjoy a variety of box lunches, which has been provided by the Foundation for the National Institutes of Health.  Please retrieve your lunch from the lobby.  You can eat in the lobby area or in the cafe where there are tables.

Once again, food and drinks are not permitted in the auditorium.  We encourage everyone to remain inside the building during lunch.  If you exit the building, you will have to go through security again, and  at times, it could be up to an hour's wait.  And please make your way back to your seats when you hear the chimes in the hallway where we will do panel -- engage with panel three.  And enjoy the break, and enjoy your lunch, and thank you again.