Skip to main content

Transforming the understanding
and treatment of mental illnesses.

Celebrating 75 Years! Learn More >>

Session 1: NIMH 75th Anniversary Event 2: Amplifying Voices and Building Bridges: Toward a More Inclusive Future

75th Anniversary


Welcome and Keynote Address and Session 1: Engaging Partner Perspectives in Research

INTRODUCTORY SPEAKER: No food or drink is permitted in the auditorium at any time.  In case of an emergency, please proceed to the doors at the top of the stairs on either side of the theater and follow signs to the nearest building exit.  Once again, thank you for joining us today.  And please take your seats, the program will begin momentarily.

[start of video presentation]

NARRATOR: In the aftermath of World War II, America faced a great and compelling need to address the nation's mental health.  In response, President Harry Truman signed legislation leading to the 1949 creation of the National Institute of Mental Health.

It hasn't been tolerated too long.  It has troubled our national conscience, but only as a problem unpleasant to mention, easy to postpone, and despairing of solution. The time has come for a great national effort.

The National Institute of Mental Health was at the heart of this effort.

For the first time, man now has the tools to explore the living brain.

Today, the National Institute of Mental Health is the lead federal agency for research on mental disorders, supporting discovery across the country and the world.  We aim to transform the understanding and treatment of mental illnesses through basic and clinical research, to envision a world in which mental illnesses are prevented and cured.

[end of video presentation]

MONICA BERTAGNOLLI: I'm Dr. Monica Bertagnolli, director of the National Institutes of Health.  Thank you, Dr. Joshua Gordon for inviting me to provide introductory remarks at this momentous event.  As many of you know, Dr. Gordon is leaving NIH later this year to return to Columbia University.  We are so grateful to him for inspiring leadership over the last eight years.

Josh, we will miss your passion, commitment, unwavering voice, and compassion for advancing mental health.  You truly embody the NIMH and NIH missions and keep sight of the millions of people we serve through medical research.  We have no doubt you will continue making outsized contributions to mental health in your new role.

For the past 75 years, NIMH has supported tremendous initiatives that have advanced our understanding and treatment of mental illnesses.  Today, we are recognizing the incredible accomplishments NIMH has made in mental health research.  From the FDA approval of lithium in 1970 to the recent approval for -- of the first drug for postpartum depression.  NIMH research is impacting the lives of more than 57.8 million individuals living with mental illness in the United States, and even more around the world.

This impact is important because we know mental illnesses are complex, and can affect people of all ages, genders, races, and ethnicities.  Mental health research faces significant challenges, including the accurate diagnosis and long duration of mental illnesses, which often manifest at a young age and contribute to many years of disability.  Mental illnesses are the fifth leading cause of disability in the U.S., accounting for 6.6 percent of all disability adjusted life years.

One of the most tragic outcomes of untreated mental illness is suicide.  In 2021, suicide was the second leading cause of death in youth ages 10 through 14, and the third for youth ages 15 to 24.  And suicide is one of the drivers of an alarming increase in mortality among working age adults in the United States.  We know that the impact of the COVID pandemic on mental health is one of the most persistent challenges resulting from that crisis. 

An important way we at NIH and NIMH can go about addressing these challenges is to continue to invest in research to achieve equitable access to health care and evidence-based treatments, especially for populations experiencing health disparities.  We also need to ensure that people from all walks of life can participate in and benefit from biomedical and behavioral research.  NIMH is addressing this through community-based interventions targeting structural determinants of health, like the community partnerships to advance science for society or compass program.

We're also committed to fostering an environment of inclusion within the biomedical and behavioral research workforce.  We recognize that solutions to complex problems in biomedical and behavioral research require teams of specialists from diverse backgrounds, working across the boundaries of disciplinary silos.  NIH is committed to improving recruitment, training, advancement, and retention of researchers from diverse backgrounds, including those from groups underrepresented in the biomedical and behavioral science.

In closing, I would like to congratulate all the wonderful researchers associated with NIMH over so many years for your incredible contributions to the health and wellbeing of all people.  We know that NIMH research is more important now than ever before.  The progress, advances, and successes made by NIMH supported research are shared by the greater research community, and the many individuals and families affected by mental illnesses.  At NIH, we recognize that our work is not finished when we deliver scientific discoveries.  Our work is finished when all people are living long and healthy lives.

JOSHUA GORDON: Good morning.  I'm Joshua Gordon, director of the National Institute of Mental Health. It's my pleasure to welcome you all here this morning to thank you for coming here at the National Archives, and around the globe on remote video.  Today's symposium is going to focus on NIMH's role in society at large.  And feature presentations from numerous experts on health equity, sociology, psychiatry, and public health.

For 75 years, NIMH has been at the forefront of mental health research and is the largest funder of mental health research around the globe.  You heard our mission earlier to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure.  But that mission is only met when those preventative recovery-based and curative interventions are available for all throughout the globe.  And so, our 75 years has not just been aimed at making those advances, but also ensuring those advances are broadly available and equitably applied.

Today, the focus of this symposium today is on that breadth of equity and of access and of approaches.  As you heard from Dr. Bertagnolli, it is bittersweet that I go into the symposium knowing that it will be my last of the 75th anniversary as NIMH director.  I'm extremely proud of the accomplishments that we have made during my tenure.  These accomplishments go beyond the science to better approaches to the availability and -- of evidence-based care throughout the United States and around the globe.

The decision to leave NIMH was not an easy one for me.  I have not only drive tremendous value from my tenure here but have truly enjoyed working with many of you in the audience today, both here and virtually.  And will miss this place and more importantly, these people equally tremendously.  But today is not about me.  It's about NIMH.  And in particular, it's about Amplifying Voices and building bridges toward a more inclusive future.

I want to thank -- before I make any further remarks, the really talented team of NIMH-ers who put today's symposium together, led by Jamie Driscoll, but really numerous people who will be thanked throughout the day.  And I want to thank our speakers, and moderators.  Many of whom traveled here and woke up in time zones that are insane for their -- if you'll pardon the pun, for their own mental health.  But we really appreciate it.  And we wanted to make sure to be able to spend a full day with you today on these important topics.

So, what about these topics?   Well, first, we're going to talk a lot today about mental health disparities.  We all know that approximately one in five U.S. adults live with a mental illness, and that these are complex and often lead to disability.  But hidden within those statistics are the striking disparities that exist in the prevalence, course, and burden of mental illnesses.  Individuals from underserved communities frequently experience reduced access to high quality evidence-based mental health care, received fewer follow ups and experience worse outcomes.

And a major challenge to us as a whole is expanding access to evidence-based treatments, especially for populations experiencing these disparities to overcome these challenges.  NIMH is committed to supporting initiatives that advance policies and practices to reduce these disparities, to promote equity, and to address the needs of individuals from underserved communities, and those who have been traditionally underrepresented in health research.

Accordingly, since I've become director, we have made strides to enhance our focus on mental health disparities, including in 2018, establishing the NIMH disparities team to bring together staff from across the institute, both on the extramural and intramural side, to focus on mental health disparities research by ensuring broad Institute wide coordination, and to develop and sustain a robust disparities research portfolio.  In 2020, we established the Office for Disparities Research and Workforce Diversity to ensure that these aspects of our portfolio were handled by a professional staff with dedicated time to ensure its enrichment.

One goal of today's symposium is to bring together people living with mental illnesses as well, clinicians and communities to reflect on past and present challenges in mental health research and chart a more inclusive path forward.  We can learn from previous and ongoing NIH activities that have successfully engaged and involved diverse communities in their research.  As many of you know, since 1989, NIH has engaged deeply in genetics research with the NIMH human genetics initiative, which built a repository and genomics research -- resource.  This is the largest repository in psychiatry, providing access to roughly 400,000 well characterized samples with a wide range of mental disorders across ancestrally diverse populations.

More recently, we launched the ancestral populations network to enhance the diversity of genome wide data.  Understanding that by enriching the diversity of these samples, we can speed discovery and ensure a transition to biological investigations that will have the potential to help all of us throughout the globe.  Speaking of all of us, the NIH, in 20 -- when was it?  2018 I think -- launched the NIH All of Us Research Program, which is building a very diverse cohort of eventually one million individuals who volunteered donate their genetic information, their electronic health records, and other data to a large repository.  And more importantly, to participate actively in research over time.

This diverse cohort is diverse in many different ways, gender identity, sexual orientation, socioeconomic status, education, disability, and health status.  And we've been working with this data at NIMH to incorporate and -- sorry, with this cohort to incorporate behavioral tasks and mental health measures that we expect will help us transition towards a more precise psychiatry for all of us.

Building on these foundations, we've begun to prioritize research that advanced practices that build on this information to reduce mental health disparities, promote equity, and address the needs of people from communities underrepresented in science.  We've developed a strategic framework for addressing disparities across the board, and especially for addressing youth mental health disparities.  This framework builds on five specific priorities -- areas, including engagement in communities, suicide prevention, building novel approaches for novel -- for underrepresented communities, and more.

We encourage grant applicants to examine the underlying causes of disparities and address those causes through interventions that may not always be in the health care space.  One prime example of that work is our NIH wide collaboration.  The compass initiative, which works directly with community-based organizations to test interventions that intervene on structural factors in the community, which include much broader factors than health care, including food access -- healthy food access, including green space access, and many other structural factors in our communities that we know contribute to these disparities.

It's not good enough, though, to address the structural factors, we also have to help people who have already been affected by them.  And so, NIMH encourages grant applications that use that understanding of the causes of disparities and their effects, to explore ways to mediate that risk, and to build resilience.  These include a variety of different approaches to reducing suicide risk in minority youth, and digital mental health interventions that have the potential to reach deeply into underserved communities.  All of these studies are always guided by an understanding that in order to be able to intervene, and help communities when needs to engage them, and you will hear a lot about that today.

Our focus on ensuring our research has impact for all of us means going beyond our borders, as well as there are tremendous mental health needs around the globe.  And only by working around the globe, can we understand and meet those needs.  Accordingly, we have also identified global mental health researchers as a priority.  Establishing also in 2018, or 2020, sorry, the Center for Global Mental Health Research, which has as a priority -- including diverse populations, contexts, and regions around the globe -- to accelerate and enrich scientific advancements that benefit under resourced communities in especially in lower- and middle-income countries.

We are supporting research that elucidate the social drivers of mental illness that explore community-based interventions, and then do it in a way that build on the strengths of these communities around the globe.

Finally, in order to address the needs of all we need to have a mental health workforce and mental health research workforce that is representative of the diversity of the communities we seek to help.  We recognize that we were falling short on this endeavor.  And so, also in 2020, we began aggressively listening, reaching out to -- not just communities, but communities of researchers -- to understand where the challenges were for minority researchers and others are underrepresented in the biomedical research workforce.

We learned and listened, that many of the investigators from these communities felt like that the problems that they were interested in addressing were not seen as priorities by NIMH and by NIH at large. That they faced numerous challenges both within their institutions and across the community at being respected, at being given the time and resources they needed to succeed.  We and other institutes across NIH redoubled our efforts to support individuals not only in the training phases, but also later on in the early faculty period.

For example, NIMH joined other institutes in supporting the common fund initiative, first program or faculty institutional recruitment for sustainable transformation that provides support to universities, to diverse -- to develop cohorts of diverse faculty.  And ensuring that they made the investments they needed, and that we help them along the way.  We've also developed and sustained minority fellowship programs, centers for minority health, et cetera, over the years.  And these have now matured to the point where you'll see today, many talks from investigators who are committed to these areas, and who are -- have benefited from these programs.

In conclusion, I want to note today that we celebrate our progress, the advances, and successes that NIMH has supported over the years, and especially more recently.  But we also need to work to ensure that this progress is met by even greater progress as we look forward into the future.  And so, this symposium is meant today not just as a celebration, but also as a challenge that as we move forward, we continue to focus on the impact of our work broadly, throughout society, and for all.  And with that, I want to take a moment to introduce our first keynote speaker of the day.

I have the pleasure of introducing Dr. Ruth Shim, the Luke and Grace Kim professor in Cultural Psychiatry, and a professor of Clinical Psychiatry in the Department of Psychiatry and Behavioral Sciences at the University of California Davis.  And I appreciate you making the trip out here and waking up so early in the morning.  Dr. Shim also serves as the associate dean of Diverse and Inclusive education at UC Davis at the School of Medicine.  And provides ongoing clinical psychiatric care at the Davis Early Diagnosis and Preventative Treatment Clinic.  I think I'm pressing some buttons by mistake.

I could go on and on about Dr. Shim, but we have a very busy schedule today.  So, instead, I will ask her to come to the stage and talk to us on past and present challenges in mental health research and charting a more inclusive path forward. Dr. Shim.

RUTH SHIM: Thank you, Dr. Gordon, for that introduction.  And I am so pleased to be here, albeit early in the morning for me, but I'm here and energetic and ready to talk to you all today.  I'm happy to be invited to talk a little bit about the past, the present, and the future in this symposium that we're here to gather about thinking about inclusion and diversity, and equity and justice.  I do have a lot to say in a short amount of time.  So, I want to just jump right in.

So, we have a couple of things that I'm hoping that this talk can cover in a very short amount of time.  I want to take some time to think about the history of NIMH, and the history that is, I would say, a little bit checkered in how we think about it.  I want to talk about key concepts that are essential to advancing diversity, equity, inclusion, and justice.  And I hope that together we will start and then continue as the symposium goes on envisioning a new future for the NIMH for the next 75 years.

So, first, we have to talk about history.  And in order to address this history, we are going to have to deal with some uncomfortable facts and truth about the past. I take this inspiration from Maya Angelou who said, "History, despite its wrenching pain, cannot be unlived. But if faced with courage, need not be lived again."  And that is our hope for -- as we enter into our future and thinking about NIMH in the future.  That we might have the courage not to repeat the mistakes of the past.

So, at the time that the NIMH was formed, mental health care in this country was in a terrible state.  And people were mistreated, tortured, in fact, in institutions. Here's just an example of the terrible conditions that people with mental health conditions experienced at the time of the founding.  And this book by Albert Deutsch really kind of highlighted how terrible the conditions were.  He called this book, interestingly enough, The Shame of the States, as kind of putting the onus on states for a problem that was definitely a national condition.

But this quote, I think, really highlights how terrible the situation was.  He said, "As I passed through some of Byberry's words, I was reminded of the pictures of the Nazi concentration camps.  I entered a building swarming with naked humans herded like cattle and treated with less concern.  Pervaded by a fetid odor so heavy, so nauseating, that the stench seemed almost to have a physical existence of its own."

So, this was the context by which NIMH came to be. It was the idea that the National Institutes of Health needed to take some priority and thinking about the terrible conditions of mental health in this country and needed to prioritize funding and support.  And so, you see this picture of the NIH director, and all of the heads, the center directors of all of NIH, including somewhere in this picture is the first NIMH director, Robert Felix.  I don't know which one he is in this photo, though.  I can't point them out, maybe somebody else can't.  But I'm not sure where he is, but I know he's in this photo.

And then we come to kind of the history of NIMH in terms of our directors and the people who have led the institution over the last many years.  And you can look at this photo of distinguished gentlemen.  And, you know, you may have a lot of thoughts about the leadership in terms of this photo and how it presents, and I know I did.  I think that we can all kind of marvel in the advancements and the leadership and the focus.  And we can also highlight that there was a very particular commonality to the people that are in this photo.

And something about this photo had me thinking about feminism for some reason.

So, I want to talk a little bit about Feminist Standpoint Theory, which is a theory that feminism advanced, particularly by the researcher, Sandra Harding.  So, Feminist Standpoint Theory posits that oppressed people generate knowledge that offers insights that differ from mainstream perspectives.  and that historically, institutionalized scientific knowledge has not been produced by oppressed people.

And so, that scientific knowledge is the important part of this theory.  Because what has happened over time is that the dominant culture -- which often happens to be white men -- the dominant culture has produced knowledge about oppressed people within a historical context that all still bolster their elite social positions as scientists.  And therefore, the objectivity that these thinkers in the dominant culture claim to possess fails to shape science, culture, and politics in a neutral way.  And it's important for us to think about that point about neutrality.  Because we think very much about objectivity and neutrality, but we don't always think about how the standpoint that one views these things very much clouds or prevents that neutrality or objectivity from being clear.

And so, let's talk about objectivity that gets to this concept within Feminist Standpoint Theory of strong objectivity advanced by many people, including Pamela Hill Collins.  It is the idea that oppressed groups may actually have greater objectivity due to their increased motivation to understand the views and perspectives of those in positions of power.  Because they are in positions that are not positions of power, they have the responsibility to understand those people that have power in addition to understanding of themselves.

So, the idea of strong objectivity is that those in power may have less objectivity because the realities of their oppression are often invisible to the people that are in the dominant groups.  They don't necessarily see the perspectives that come from people that are not in those dominant groups.  That is an important theme that I want us to think about as we think about some of the historical issues that we're going to kind of highlight as we go along.  So, the first historical, painful area that I want to talk about is work that Jonathan Metzl highlighted incredibly beautifully in his book, The Protest Psychosis.

And in The Protest Psychosis, he puts forth a thesis, a beautiful thesis about the idea that the very characteristics, the very diagnostic criteria that we were using to think about schizophrenia changed radically within the context of the civil rights movement.  So, the moment that Black people were fighting to ensure their civil rights in this country, the criteria, and the conditions by which we thought about schizophrenia change from a disease that previously was associated with white women, housewives, mostly, who were generally unhappy with their station weren't necessarily doing the chores and the domestic responsibilities that they previously had been doing.

And that had been kind of the most common diagnosis, at least for the Ionia State Hospital in Michigan, that Jonathan Metzl looked at this data.  And that at the time that the 60s came around and the civil rights movement got into full swing that we saw this difference in thinking about schizophrenia.  And switching to this diagnosis criteria that was really more about hostility, and more about paranoia and anger, and associated far more with Black men than any other group.  And you so, you started to see this rise in the diagnosis of schizophrenia and Black men.

And this quote from Metzl -- this quote from Taube, I think, highlights this issue.  And said that racial differences and diagnoses emerged at a predictable historical moment.  In fact, the very moment that patients became prisoners in the 1960s and 70s, much of the current body of misdiagnosis literature emerged in the aftermath of a 1969 NIMH study that used DMS-II criteria to discover that Blacks have a 65 percent higher rate of schizophrenia than whites.  And this relates to this idea that mental advances, that the protest psychosis joins with a racial unconscious identification to attack the traditional values established by white humanity.

And so, I'm talking about this concept that is probably a large and complicated issue that relates to why we still have inequities in the diagnosis of schizophrenia, along racial lines in this country.  But we have to acknowledge how the NIMH had some role in kind of advancing this theory of the protest psychosis.

And then Harriet Washington in Medical Apartheid talks at length about the fenfluramine challenge.  And for those of you that aren't aware of that particular study, this was when Black and Afro-led Latino boys with no particular psychiatric diagnosis were given -- no particular psychiatric diagnosis, but had older siblings who had interaction with the criminal justice system  were given a trial of fenfluramine to see if there was a possibility that violence could be prevented, and that violence, advancing a theory of violence being connected to biological issues.

This study, if we think about Feminist Standpoint Theory, we can think about the ways in which the study may have overlooked the perspectives of the young Black boys that were considered to not -- that the ethical conditions of these young Black boys were not centered and in the design of the study.  My purpose in highlighting this or talking about this is not to demonize the people that led the study, the principal investigators, and the co-investigators of the study.  But it is to highlight how structural forces -- many, many structural forces led to the advancement of harms to people within our communities and harms to Black people that were vulnerable in many ways.

And, you know, again, I wish that we could say that the NIMH had nothing to do with this.  But unfortunately, the NIMH partly funded this study that was considered problematic.  And Harriet Washington herself said that these scientific errors were legion.  But it is difficult to know where to begin enlisting the ethical outrageous of this study.  And it is very hard to believe that it was conducted fairly recently by one of the nation's most prestigious universities.  Such racial selection could stigmatize not only the participants, but all Black and Hispanic boys as born criminals.  The element of stigmatization is key in understanding certain racial disparities in research with children.  Because such research is not an egregious exception for Black children, rather, it is the norm.

So, that is the history, we can move on to think now about some concepts that we want to kind of align in thinking about where we might go in the future.  And I love this quote by Toni Morrison.  She said, "Definitions belong to the definer, it's not the defined."  And so, as we talk about these key concepts, I want to make sure that we're thinking about who's the person making these definitions.  And I want us to be on the same page around these definitions, so that we become the definers going forward.

And so, one of the things I want to talk about is the social determinants of health.  These are the societal, environmental, and economic conditions that impact and affect mental health outcomes across various populations.  These conditions are shaped by the distribution of money, power, and resources at global, national, and local levels, which are themselves influenced by policy choices.  And that the social determinants of health are prominently responsible for the health disparities and inequities seen within and among populations.

That definition, of course, is from the World Health Organization.  This is a conceptualization of the social determinants of mental health by myself and Michael Compton.  At the top of this figure, you can see adverse mental health outcomes and mental health inequities.  And as you move down this figure, you're actually moving further upstream.  So, one step down from adverse mental health outcomes and mental health inequities are a number of risk factors.

In mental health and in the work of NIMH, we spend a lot of time trying to identify risk factors, that is the work. And so, these risk factors become things that we can intervene on to prevent the development of poor mental health outcomes.  And so, it is important to identify these risk factors seeing as they precede the development of a condition.  But thinking about the social determinants, we understand that if you are intervening at the level of a risk factor, you're often intervening too late.  Because there was context that was said prior to the development of that risk factor.

And that context that was set prior to the development of that risk factor is what we call the "causes of the causes." Well, what Geoffrey Rose and Sir Michael Marmot called the "causes of the causes."  And you can see these causes of the causes social determinants of mental health reflected in these boxes here.  They include things like adverse early life experiences; and discrimination and interaction with the criminal justice system; and education and employment and poverty; housing issues; and food and transportation issues; access to health care; and the built environment; neighborhood disorder; pollution; exposure; and climate change.

These are all incredibly important work.  And I think it is important for us to think about how can we design interventions that intervene at the level of the social determinants of mental health.  But it's not enough just to intervene and design interventions at the level of the social determinants of mental health.  In fact, I would like to kind of pose to the idea that if we are intervening at the level of the social determinants of mental health, we're still intervening too late.  Because there is context that was created that led to the development of that social determine those social determinants of mental health.

And that context that's really underlying all of this is the concept of social injustice or unfair and unjust distribution of opportunity.  And what's driving that social injustice are really two fundamental concepts.  The first are social norms or our ideas as a society about which people in our society are worthy of advantages, which people are worthy of advancement, which people in our society are word worthy of good.  And then which people in our society are less worthy of these things?  And perhaps, which people in our society we give disadvantage to?  Which people do we create laws and policies that harm those people.

So, these ideas about who is worthy in our society of advantage and who is not also reflected our public policies.  And these are the laws that we pass, the rules of our society that govern our society.  That are reflected by our beliefs about who deserves certain things and who does not. So, these social norms and public policies interact with each other to create an unfair and unjust distribution of opportunity that sets the context for the development of the social determinants of mental health, that leads to a number of risk factors.  And then those risk factors lead to adverse mental health outcomes.  And I think most importantly, lead to mental health inequities.

Another concept that we need to think about, relating to social determinants of health, is social justice.  This report, the seminal report by the Commission on Social Determinants of Health, closing the gap in a generation, said "Social justice is a matter of life and death.  It affects the way people live, their consequent chance of illness, and their risk of premature death."  So, if we do think about social justice, and what it means we can define it.  It is a philosophical term. 

David Miller defined it as the distribution of good or advantages, and bad or disadvantages in society.  And more specifically, how these things should be distributed in society.  So, it is concerned with the ways that resources are allocated to people by social institutions.  And I'll just add on to that, John Rawls, another philosopher's perspective on social justice, which he defined as assuring the protection of equal access to liberties, rights, and opportunities, as well as taking care of the least advantaged members of society.

When we think about people with serious mental illness and people with substance use disorders, they are in fact the least advantaged.  They are some of the least advantaged members of our society.  And so, when we talk about social justice, within the context of mental health, we have to think about how are we making sure that we are protecting and prioritizing the needs of the people in our society that are often the least advantaged?

Okay.  I want to define -- a couple more definitions, and then I promise I'll be done. So, one is we've talked a lot about this.  So, I want to make sure that we're really clear on this terminology here of health disparities.  So, health disparities are defined as differences in health status among distinct segments of the population, including differences that occur by gender or race or ethnicity, education or income, disability, or living in various geographic localities.

I want to contrast this health disparities definition with the definition that I -- that the World Health Organization uses for health inequities.  And they define health inequities as disparities in health that are the result of systemic, avoidable, and unjust social and economic policies and practices that create barriers to opportunity.  I think it is very important to distinguish these two things.  It's not wrong or incorrect to talk about health disparities, but it's not as precise a term a term that we are using when we say health inequities.

Because when we say health inequities, we are specifically describing what is causing that difference between health outcomes and populations.  And we are specifically naming the systemic, avoidable, and unjust social and economic policies and practices that create barriers to opportunity.  If we don't specifically name that difference, what happens is, we as a community, I would say, we as a as a scientific community, who maybe not -- aren't doing the best job at as a practicing feminist standpoint theory. 

That we might be thinking with that health disparities definition that perhaps those differences -- perhaps the cause of those differences might be internal.  Perhaps the cause of those differences is biological.  Perhaps the cause of those differences are cultural differences between particular communities, rather than implicating the systemic, avoidable, and unjust social and economic policies and practices.

And so, if we're not implicating the systemic, avoidable, and unjust social and economic policies and practices, and we're focusing in on biological and perhaps genetic and perhaps cultural factors as the difference between why we see differences in outcomes, we're making a pretty significant scientific error.  Because what the World Health Organization has highlighted is that these differences in health are not the result of biological differences.  We know this because we've sequenced the human genome, and we understand how similar we are.

And so, these differences that we're looking for, we really have to be thinking about what are the systemic, avoidable, and unjust policies and practices are really driving the changes that we see and driving the differences in health outcomes that we see in our society.  So, I would like us to try to be more precise with our language and thinking about health inequities so that we're thinking about the right causes of these issues.  And actually, thinking about the interventions that might be most effective.

Another definition -- I think this is my last definition.  Another definition is structural racism.  Structural racism is a system in which public policies, institutional practices, cultural representations, and other norms work in various, often reinforcing ways to perpetuate racial group inequity.  By the way, it is a long four-part definition, but it is my last definition.

This system identifies dimensions of our history and culture that have allowed privileges associated with whiteness, and disadvantages associated with color to endure and adapt over time.  It is not something that a few people or institutions choose to practice.  Instead, it's been a feature of the social, economic, and political systems in which we all exist.  And it does not require the actions or the intentions of others.

And what that means is that we could get rid of all of the interpersonal one-on-one discrimination that exists in our society today.  The type of discrimination and racism that we talk about, most often, the discrimination and racism that occurs between individuals.  We could get rid of all of that, wave a magic wand, and remove that from our society.  And we would still see racial and ethnic inequities due to the persistence of structural racism, due to the way it is built into the fabric of our society.  Often built into the fabric of our society in ways that we don't even see.  And in fact, most commonly, we don't see that.  Oh, I'm sorry.

This is my last one, I promise.  Okay.  I'm going to talk very quickly about oppression and the types of oppression.  Okay.  So, this work is by Iris Marion Young, the five faces of oppression.  She talks about the ways these things show up.  Exploitation is the unequal exchange of one group's labor and energies for another group's advantage and advancement.  Of course, we see this oppression playing out in our society, in many ways, particularly around work and employment.  And so -- and you can see many people exploited in current day.  Of course, we have historical examples of that with slavery.  But exploitation exists today in modern times and the work of migrant farmworkers, work of warehouse workers that work for large corporations in many, many different ways.

Cultural imperialism is establishing the ruling class culture as the norm, and othering, those groups that are not part of the dominant culture.  So, the way I see this showing up oftentimes in research is when we are looking at research that shows racial differences between groups.  Many times, there will be -- if we're looking at odds ratios, there will be a reference group.  And almost consistently, if the study is done, we see that white people are listed as the reference group.  And that kind of automatic listing, even if they aren't the most prevalent people in a study, they might be listed as a reference group.  That kind of automatic idea that the dominant culture is kind of the norm and that we should be norming all of our ideas, all of our findings to that dominant culture is an example of a type of oppression.

Powerlessness is when oppressed groups lack power and are blocked from routes to gaining power.  That relates to issues like voter suppression, which there's a recent article describing voter suppression as a social determinant of health.  And so, that is a clear example of powerlessness as a form of oppression.

Marginalization is when we expel specific groups from meaningful participation in society.  Oftentimes, we see this type of -- we see this with mass incarceration.  But also, we’ve had historical examples of groups.  For instance, Japanese internment, the Chinese Exclusion Act, many, many examples historically, of marginalization.  And then violence or threats and experiences of physical and structural violence, and examples of these actually relate to the concept of intersectionality.  The idea that a collection of oppressions that a person that has an identity that has multiple oppressions is perhaps more susceptible to oppression and probably problems associated with oppression.

And so, when I think about violence, I often think about the fact that Black trans people are most likely to be murdered than any other group in our society.  And that we have this incredibly high rate -- murder rate in this particular population in which multiple identities that are at risk for being oppressed are expressed. Okay.  I'm done with the -- I am finished now with the key concepts.  But I want to talk a little bit about the NIH and this issue of funding inequities -- funding inequities, not disparities, but inequities.

So, in 2011, the Ginther report found that Black research funders rates were 10 percentage points lower than that of white researchers.  That was in 2011.  And then it was work done.  I think Dr. Gordon spent a great -- did a great discussion about all of the good work that is happening at the NIMH, and so -- at the NIH as well.  From 2003 to 2020, you saw a significant increase in the number of R01 grants to Black investigators.  That number rose in that time from 52 to 166, and the success rate doubled to 24 percent.  Although white investigators still have a higher rate of success at 31 percent.  And then the NIH Chief Officer for Scientific Workforce Diversity Marie Bernard said that this is only incremental improvement.

So, in the time that I have left, I want us to talk about a vision for a radically inclusive NIH in the future.  And, you know, I don't have to speak about the work that's happening now, because you heard about that from Dr. Gordon.  And you will hear about that work in the present day, the work that's being done, and I do think that work is great work.  But I do think there is more work to be done.  There's significantly more work to be done.  And so, if we are to have this radically inclusive vision for the NIH, there's a couple of ways that we need to approach our thinking around this.

The first is that we have to kind of move towards how do we get out of the unequal state that we are in right now.  And so, we're in this state right now of inequality in which there's unequal access to opportunities.  This is not only for our patients, and for the people that we serve with the research that we do.  But this is also for the people that do this research, the people that are investigators that do this work.

And so, some people, and especially currently in our current political environment, are very focused on trying to solve this problem with a model of equality.  Equality is when we evenly distribute tools and assistance.  And equality is most focused on fairness.  It's the idea that if we do something for one group, we have to do the exact same thing for the other group.  That there is, there is no special treatment.  There is no preferential treatment for any particular group of any population.  And you can tell by this figure, that if we are focusing on equality, we are not going to accomplish our goals.

And so, part of the work that we need to do is think about equity.  And equity is when we customize tools to identify and address inequalities.  And so, equity is focused on giving the particular population what that group needs to advance and to have the opportunity to live their best life.  You are going to hear presentations throughout the day today about interventions that are focused on equity, that are focusing on customizing tools to particular populations in very effective ways.

But unfortunately, equity is not enough.  It's a great starting place and its important work and we have to do that work.  But we also have to think about higher levels of interventions.  And that is where we think about justice.  Justice is when we're focusing on fixing the system to offer equal access to both tools and opportunities.  So, it's not enough to design the interventions and target the population, we also have to look at our system.  And we have to make changes at the systems and the structural level to address these changes in differences.

And so, you know, I started the presentation talking a little bit about power, and particularly who has held power and where we should be thinking about where power might be held in the future for NIMH. And the model that we have offered for the past 75 years has been a model of power over where certain people have the power to influence or coerce others.  And again, sometimes we think that the way to move forward is by an individual level and individual focus this idea of power to.  That you give power to certain individual people, certain investigators, certain people that might change existing hierarchies.  You fund certain scientists one by one.

But even that model is not going to get us to where we need to be.  The areas that I think we need to focus on and consider where we might be building going forward is power with, which is the collective power of communities or organizations.  And power within, which is when we give people the individual capacity to exercise power within their communities and organizations.  So, we have to shift to this model of power over to this model to power within and power with.

How do we -- and I think that's really important actually thinking about power with and power within that relates to this point that Bell Hooks added on to feminist standpoint theory.  So, we have this feminist standpoint theory.  But then Bell Hooks spoke beautifully about the power that comes from being in that oppressed position.  She said, "For me, the space of radical openness is a margin, a profound edge.  Locating oneself there is difficult yet necessary.  It's not a safe place.  One is always at risk.  One needs a community of resistance."

But I love the idea of thinking that these communities, these people that we have often looked at from a distance and said, "Oh.  It's so sad what these people are going through."  And we need to help them.  We need to do something to make their experiences better.  That we could shift our focus and our standpoint, to understand their power.  To understand that they're not actually -- they're in this margin, but that that margin is a profound edge.  And it is a place of which if we take that perspective, we might be able to envision a future that is incredibly powerful.

This is an image that I absolutely love from a beautiful paper published in science called Fund Black Scientists.  And you can see here, this idea of the racial -- the NIH racial funding disparity, and how it leads to problems, in which we get a very particular perspective on the research that we're doing.  And that if we think about changing our policies to be more equitable, if we think about bringing anti-racism work into the work that we do, we're actually creating the opportunity for greater intervention and greater creativity.  And a greater ability to solve these massive challenges that we're working on trying to address.

And one of the ways I think that we can do that is with community-based participatory research.  And so, these guiding -- and again, you are going to hear about community-based participatory research throughout the day.  But these guiding principles of community based participatory research, I think, are a path for us.  It's acknowledging that communities are unities of identity.  It's building on existing community strengths and resources. 

Facilitating partnerships that are equative, collaborative, empowering and address social inequities.  Committing to co-learning and capacity building.  Balancing knowledge generation and intervention to ensure mutual benefits for our partners.  Focusing on local issues of public concern, utilizing a cyclical and repeatable process, delivering results and knowledge to all partners.  And I think most importantly, establishing sustainable, long-term partnerships with communities.

So, I'm going to end -- I'm going to wrap it up. And I want to talk about my ideas for where we might be going if we think about future directions for the NIMH.  I think that we need to expand and build on the community -- the great community-based participatory research that is going on.  But we also need to invest in community-initiated research.  We need to think about giving funding and power to those people in those communities that have perspectives that are -- that could really solve the problems that we're working out.  And changing our standpoint, changing our focus around that.

We need to reevaluate and reassess risk from a different perspective.  And that perspective needs to consider positionality.  Because the ways in which we talk about and think about risk when we -- when I say we should give money to communities to do community-initiated research, that sounds very risky to a lot of people.  The idea that we could lose money because we would be giving the money to people that we don't necessarily trust would use that money appropriately.

And I would challenge us to think about the things that we consider to be risky are things that we consider risky from our perspective, but in fact, aren't really that risky compared to some of the decisions that we've made throughout history as an institution.  We need to center the expertise of oppressed people, especially minoritized people and people with lived experience.  I cannot say this enough, but it's back to that standpoint theory that people with lived experience and people that have histories of oppression bring so much important knowledge and perspective and power if we choose to utilize that power.  If we choose to respect that knowledge that it -- and not necessarily believe that that knowledge is not coming from a powerful place.

And I think finally, we need to directly redress the harms of the past.  We need to acknowledge that we have not always done things the way that we should. And we should take very clear steps to move forward in a way in which we acknowledge those harms before we start to move towards a future that really addresses these issues.  And so, I will end with this Lumbee tribe proverb, which says, seek wisdom, not knowledge.  Knowledge is of the past.  Wisdom is of the future.  Thank you.

JOEL SHERRILL: Good morning.  I'm Joel Sherrill.  I'm the deputy director of the NIMH Division of Services and Intervention Research. And before I introduce the next panel, I want to, on behalf of my colleagues and behalf of everyone really, I want to thank Dr. Shim for the incredibly informative and engaging presentation.  It was a remarkable keynote that really set the stage and provided inspiration for the remaining sessions today.  Thank you.

Dr. Areán was unable to join us today unavoidably. And so, this morning I have the pleasure and the honor of introducing our first session speakers who will focus on engaging partner perspectives and interest in NIMH-funded research.  Our presenters for this session include Dr. Loretta Sweet Jemmott, who is the vice president of Health and Health Equity at Drexel University and a professor in the College of Nursing and Health Professions at Drexel University.  Dr. Jemmott is one of the most -- one of the nation's most foremost health promotion researchers in HIV/AIDS Research Prevention.  And Dr. Jemmott's health equity and social justice work, as we'll see, gives voice to the voiceless and hope to the hopeless.

She'll be joined by Dr. Rinad Beidas.  Dr. Beidas is the chair and the Ralph Seal Paffenbarger Professor of Medical Social Sciences at Feinberg School of Medicine at Northwestern University.  Dr. Beidas' research leverages insights from implementation science and from behavioral economics to facilitate the efforts of clinicians, health leaders, and organizations to use best practices to improve the quality and the equity of care and to enhance health outcomes.

And then our third panelist today includes Mr. Carlos Larrauri, who is the co-chair of the Accelerating Medicines Partnership Program for Schizophrenia, otherwise known as AMP Schizophrenia.  And he's formally served on the boards of the National Alliance on Mental Illness, or NAMI, and NAMI Miami-Dade County Board of Directors.  Through his personal and professional experiences, Mr. Larrauri has found that access to quality mental health care, community-based treatment, and early intervention affords the best opportunity for recovery.  Mr. Larrauri aspires to interface advocacy and research to reduce health inequities for people living with mental illness.

So, today, to maximize time for discussion afterwards, the presentations will continue in succession without interruption. And then following the three presentations, we'll have time for panel discussion with questions from the live and virtual audience.  So, now please join me in welcoming our first presenter, Dr. Loretta Sweet Jemmott, to the stage.  Dr. Jemmott?

LORETTA JEMMOTT: Thank you.  Oh, that's got to be it.  Okay. Good morning, everyone.  It's a pleasure to be here today.  Wow, what a presentation this morning.  So, thank you.  Giving power to the people, girl.  That's what we're going to be talking about.

And so, my talk today focuses on "Listening to the Voices and Responding: The Jemmott Community Engagement Model for Improving Inclusion."  And here it has health outcomes, but it really talks about health equity.  So, I'm going to be talking to you about that. So, I began today -- you know, I'm the kind of girl that got to walk around, so excuse me.  So, [laughs] -- but we got to really think about -- you know, I learned a lot from Maya.  And she said to us, you know, "That I learned that people will forget what you said, and they'll forget what you did, but will never forget how you made them feel."

So, it's important in our work to remember that people have feelings and we got to make them feel valued in what we do.  And so, that's the work that we're going to be talking about today.  And I get excited about it, so please slow me down.  I go really fast because I can get through.  But if I'm talking too fast, do this.  I know you're not waving at me.  You're just telling me to slow down.

So, go along with me as I go forward.  So, here we go.  I was one of those researchers that was funded in that 2003 -- and you point [laughs].  So, my husband and I were able to get money through that and really get a lot of randomized control trials to do this work for HIV.  And it's not working.  Okay. Key question -- key questions today that I want you to focus on is, who are we -- come on.  Who are we as NIMH mental health researchers, clinicians, and trainer?  Who are we?

Look at that.  Who the heck are we and what do we do?  And then who are we to them?  The community residents who we want to reach and participate in our research.  That's critical as we move forward to just think about it for a minute.  And then one more question.  How do we conduct our research and our clinical practice to amplify the voices, to build bridges, to make people feel valued, dignified, respected, and included? Critical to this work we're trying to do.  So, how do we do this work?

We can use -- excuse me.  I can -- my buttons are going to touch this here. How do we do this work?  How do we do it?  We really can use community-engaged approach -- the community-engaged approach. So -- but what I talk today therefore, is going to focus on a couple of things.  It's going to focus on community engagement.  Process is just as important as outcomes.  You are going to hear me say that over and over.  Process is just important as outcomes.  And imagine if for the reason of some of that, and let's talk about impact.  But what is community engagement?  Really community engagement -- I need to sit still.  It's not really good.

It's not grooving with me.  So, let me -- I got to sit still.  So, what is community engagement?  Okay, I'll stand here.

Community engagement is a powerful and inclusive and effective process that really gives the community the -- their voice, their power.  You know, it really makes them feel good.  It's social justice.  It's talk about health equity framework to promote and reduce health disparities. But today, our research really, really, really needs to do this.  We really need to focus on inclusion and community engagement in an authentic kind of way. So, what are the benefits of community engagement?  What are the benefits of doing it this way?  One -- I'm going to give you the top 10 reasons now.  Number one --

And now let me give it to you.  It helps build trust and build relationships.  It connects people to resources and creating access.  Build solutions.  I'm going to just -- this -- increase community ownership.  I need help, it's not moving.  Okay.  Enhances conflict prevention, builds capacity, process of justice and equity, amplify voices, builds bridges, demonstrates value and respect.  The top 10, but I can't count.  So, I went on.

It enhances strategies for all the work we're trying to do with dissemination and translation.  But most importantly -- I still can't count, I added one more for you -- it's just the right thing to do.  And so, as we do this work -- so, I created a model that we use over time.  Now I'll remind you, we've been -- my husband and I have been funded for many, many years over the last 30 years.  We've been in this HIV game for a long time.

We realized that in the '80s, that HIV can be prevented by behaviors.  So, we became behavioral scientists trying to look at ways to reduce people's risk for transmitting this virus.  And we wanted to focus on sexual risk reduction.  So, all of our research focused on reducing the risk of sexual risk behaviors of folks so that we can reduce HIV.  This -- so, here we go.  We created a model.  What is this Jemmott Model?

It's an authentic process that prioritizes the community, resident's context, and culture.  Man, this focuses on the code of the street.  What do I mean by the code of the street?  I took this course 30 years ago and this professor taught me that the code of the street is important as an anthropologist and as a demographer.  He said, "If you want to change a person's behavior, Loretta," in class, "You got to focus on the code of their street."  Why they walk the way they walk, talk the way they talk, do what they do.  It's their code, man.  And if you want to change behavior, you have got to sit down and deal with it. Understand people's code of their street to try to help them move forward to save their lives and risk behaviors. And so, that focuses on that.

It employs relationship building because it must -- it's all about relationships to promote inclusion and value, sustainable partnership that you talked about earlier.  We talked about how it plays a role in all of our research.  If you want to do the science you're trying to do, you have got to build trust and community support for our protocols and really helps with every part of our research that we trying to do from beginning to end to findings and disseminating it.

But it's guided by eight principles.  The principles are trust, time, talent, tenacity, talk, transparency, and tireless faith.  And we got to break the thing of mistrust because they do not mistrust us. The community -- and I was -- I -- when I first started this line of inquiry and working in the communities, my husband and I went out in the community in the '80s and we were trying to build relationships.  And I was the professor at the University of Penn and so was he.  And so, they said, "You nothing but an Oreo."

I -- my husband was, like, ready to get up. I said, "No, no, no, no, no. Are you --" I said, "Can you tell me more?"  I'm a psych nurse.  "Can you tell me more about what you're thinking about?"  And he said, "You're Black on the outside, but you're white on the inside.  You work at Penn."  So, we had to work through what that felt like for us coming in the community because I'm Black and they Black and I lived in the hood too.  I'm first generation.  Come on, I get it.  But they didn't get it because they don't know me.

And so, we got to really take time to do the things that we learn to do.  So, we really worked really hard to really do this kind of work to get these interventions to change behavior.  But what happened along the way, it's called process.  We didn't just design these interventions to be effective.  We really had to learn the code of the street, hang out, and understand what's really going on in a given population to really do this kind of work.  And that's what we did.  So, here we go.

We created this model that focuses on inclusion and caring.  If people know you care about them, they'll move forward with you.  So, we got to remember that all the work we do got to be guided by those principles.  So, my eight Ts that I've been talking about since I started thinking about the work we've done is -- the first one is time -- I mean trust.  So, you got to build trust.  You got to really build the trust in the people in the community in a genuine, authentic way.  You got to take time to build the trust because trust doesn't come easy.  So, you got to take time to build the trust.

And then you got to realize that you got to be transparent, man.  You coming in not real, they can see right through you.  So, here you go, you're coming in there and they can see right through you.  You're not taking the time to talk to us and you still talking the same junk, so I don't even trust you.  So, we got to really think about those Ts to make that happen.  And then we got to really talk.  Do we talk to them or talk over them?  Do we do language that's over the head or do we get down and get with it? Or do we talk too much and not listen? So, those are the key things that we really got to think about.

Then we got to think about the team.  I heard what you said.  People got power.  People got knowledge.  They need to be part of our team.  And we got to acknowledge that we're not just the experts, man.  We got all these Ph.Ds. and we come around the table and we think we know what we're doing.  We do not know [laughs].  So, let's get that out of our heads that the community has power and voice.  So, let's make them part of our team.  They said to me, "Dr. Jemmott, we got stuff.  We know what we're doing.  Can we be part of your team?"  And I said, "Oh, okay, let's make this thing happen."

But then when we do that, we got to realize the other team is they have talent.  They got talent to bring to the team.  And then -- so, we bring them to the team and then things happen.  The door is closed.  It's not hard.  People -- there are people that don't want to work with us.  You got to knock on one door.  If the door closed, you got to come through the window.  But you got to stay at the table.  So, tenacity is working through all the things that happen in our community that block us from doing the work.  But you got to stay at the table.  Because if they see you at the table and you stand there, then they trust you.  They believe you.  But if you give up and leave, then they know here they go again.  And so, we really got to do all this work.

And the last T is tireless faith.  You got to believe in the process.  You got to have faith in the game.  You got to faith in the people.  Faith in what you're doing.  Faith that God's going to lead you and not going to let you go because this work is hard work and you got to really want this to be.  And you got to really engage people in a way that makes them feel in a caring, inclusive way.

Now, does this work?  We do this -- we did this every study we did.  And so, here we go.  Imagine if.  Imagine if we conducted research that demonstrated care and built a trust and a meaningful conversation that understood the code of the street. Imagine if we conducted research and invited community stakeholders, man, to the table with the partners and recognizing their value.  Imagine if we conducted this research and for tenacity and commitment to caring, man. Be the little red engine they could. You know how that book?  The book says, "I think I can.  I think I can.  I think I can."

We've really got to be there because this is hard work, and you can't give up and you got to stay at the table.  You got to have tenacity and you got to be the engine that could help other people say that they could be the engine that could too. And so, imagine if our research gave voice to the voiceless and hope to the hopeless.  Just imagine if.  So, imagine if we did this type of engagement in our research across the country and across the world using those eight Ts of community engagement.  Man, that's called impact.  That's called impact.

So, how do we use this man?  How do we do this in our real world with all the money? My husband and I have been blessed to have over $150 million in NIH funding over the years.  We've done lots and tons of randomized controlled trials and we learned a lot in the process.  But how did we do that?  Oh, we had great outcomes too.  And so, all this stuff, all this funding, all this behavioral change that we've done, how do we do that man?

So, we did it with stakeholder and community leadership.  Put it in red because that's the first phase.  We got out in the street.  We hung out with the community.  We learned the code of the streets.  We did everything that we wanted to do with community advisement.  We learned all the things and we added our theory into it. The community guided the theory with what we needed to do.  And then we developed a questionnaire based on what we learned from the community and took that into the fact that we wanted to do it with the power of the community.

We designed an intervention based on what the community says that understanded what the community wanted and how can we make this happen using our theory and our approach that we already knew might work. And then what we did was we pilot tested the interventions and made sure that it was okay and met the needs of the people.  And it guided us and edited it for us.  Then we did the randomized controlled trial.  Followed the people's route 6, 12, 18 months, 24 months, depending on the study.  And if it worked, we did the hallelujah dance. We did the hallelujah dance.  We were tap-dancing saying, "Yay, it works."  So, now how we do it -- we do, you got to give it to the community.  You got to stay and train people to really continue this work and relieve and adapt it for real-world settings.  So, that's what the Jemmott do.

And so, based on that, here comes the curriculums that we did in some of this work.  We started with Be Proud! Be Responsible! an intervention for young African American men adolescents from 13 to 18.  And we were able to randomize -- a randomized controlled trial with effective behavioral change.  A control group with the kids were randomized to the HIV risk group or our control group on health.  And it worked.  And we said, what about boys and girls?

And we included girls in Making Proud Choices! The same model, the same plan. And then we said, what about abstinence? And then we did stuff around abstinence to make sure that we got kids to maintain the abstinence and practice no sex. And then we replicated with pregnant teens called Be Proud! Be Responsible! Be protected! continue to work. Then we replicated it with the Latina teens and with Dr. Villarruel and we continued to work.

And then we got crazy to say, let's work with clinical populations.  What can we do in clinical settings.  Now, and if you go to a doctor's office, you only have 20 minutes.  They so fast in and out, how are you going to change behavior? So, we wanted to create a model that clinicians can use.  And so, what we did was we did a randomized control trial and randomized women to a 20-minute skill building group, a 20-minute intervention on our knowledge alone, a 3-hour skill building, a 3-hour information alone, and it contributed to One Health.

And 500 women went through the study on a clinical site.  And we figured out at the end of the study while 3, 6, 12 months later, which intervention do you think worked?  The 3-hour group work was skill building.  But so did the 20-minute model.  We got behavior change at the 20-minutes model that not only changed behavior at 3, 6, and 12 months, it had a reduction in STD incidents.  So, now we got a model for 20 minutes.  But why?  Because it demonstrated caring.  We included women.  We did the whole thing.  People change their behavior if you think you care about them and you are really committed to the process.  We committed to replicate it and it continued to work out.

And so, then a gap became CDC did this thing called Research to Classroom: Programs-that-Work and put our programs on their -- adolescent programs on their website for people to use.  And then in 2005, the Department of Health and Human Service Office of Adolescent Health put it on their website.  And what they decided to do was to fund issues around teenage pregnancy because teenage pregnancy began to rise, and they wanted to reduce the incidence of teenage pregnancy.

So, they put programs that work like HIV risk reduction because if you reduce risk for HIV, hey, it's the same behavior for sex and pregnancy.  So, they put on their website you had to use these evidence-based programs if you wanted to get funded by them.  So, they had 20 evidence-based programs on their website and nine were mine.  Whoa, give it to the lady.

Nine were mine.  And so, now we're talking about dissemination and getting this stuff out. Now, how do we get these things out to people as end users?  How do we make this really happen?  And so, this was 2005 when they funded their first cohort.  These were people using my work in 2005.  They funded the cohort again in 2010.  It was double.  And then 20 -- again in 2015, it was more than that.  And so, it's called impact.  How do you do this work?  Impact.

And so -- but how do we translate this work to the end users?  How do we dissimilate this evidence-based works in real world settings.  You got to pass the baton to people.  Man, that's hard work when you work really hard on your stuff and now you got to give it away.  How you going to give it away and make sure they use it in a way that makes sense and continues to empower the people that you're trying to empower? You got to pass the baton and real what -- now, most of you know about relay races.  You got to run.  I was a relay racer.  I'd have to pass the baton.  You got to pass it real fast.  My track coach teacher told me that, "It's not about passing the baton real fast, Loretta.  It's about how smooth you pass it."  Because if you can pass the fast, you might drop it.  But if you did a smooth move, they would get it and run with it in a way that's exciting and good.

And so, I learned how much I'm a pass the baton. And so, we passed the baton.  But how?  We -- every time they got funded, one of those agencies called us.  We went to them to see what they were doing.  We helped them conduct research.  We understood the code of their streets.  We told them how to contingent theory.  We also worked with them in terms of making sure they can maintain their core elements and they could revise intervention. It was a role plays and names of the people that were a part of their culture.  And so, we did that.  And then we provided training using the Jemmott model with caring and value and respect and fidelity.  And we continued to do that work.  And so, that happened.

And then we got funded again to look at some other issues with families.  NIMH had an Office of Age Research and really wanted to focus on families.  We were one of the teams funded.  So, we did a study in 42 housing developments around the city of Philadelphia.  We did Mothers & Sons.  We -- 40 -- we had 513 mothers and sons' dyads.  And come to the study.  We had over 250 dyads.  They were randomly assigned to HIV risk or control group on health.  It was 4 days, four Saturdays in a row right in their development.

Not only did we get behavioral change in their sons, but their mothers too.  The sons did not even participate in the study.  They came in, did the questionnaire, and went home.  It was the mothers that stayed with us until 12 months later.  We were just hoping the mothers talk to their sons.  So, we improved parent-child communication, reduced the risk of behaviors of the sons in the 12-month follow up.  But also, the mothers learned to change their behavior too.  It was exciting.

And then we said, what about churches?  So, we then did the same study with churches, but we focused on abstinence.  Oh, my god. We had to meet with the community leaders, meet with pastors.  And the first study with mothers and sons, we had to meet with the housing development, tenant council presidents, everybody that they get the buy-in could support. So, it's all about building community together to kind of do something you really want to do.  So, in churches, man, I met with the pastors.  Had focus with pastors and leaders, and the pastors say, "Dr. Jemmott, what is your definition of abstinence?"

And I said -- my staff is looking at me.  I said, "Well, so what is your definition of abstinence?"  They said, "Absent of -- absence of thought, feeling in behavior."

I looked around and I said, "Okay, pastors, everybody, is that what you want us to work on?"  And they worked on their own definition, and they changed his definition, not me [laughs].

And that worked well.  And so, we were able to really partner with the churches, the pastors, the community leaders, everybody, community families, and parents. And did a study called "Together, We Can Do All Things" with different churches and we did that.  Then we did something with barbershops called "Barbers Building Better Brothers," and continued to do that work with barbershops and barbershop owners.

And then we moved to South Africa and did work with South Africa.  Now, the key thing in South Africa, we didn't know anybody.  We didn't know the language.  And we still didn't know to.  And so, we spent 18 months learning the culture, the code of the street, working with people, community leaders, stakeholders, NGOs, health ministries.  And we really were able to design an intervention for these young people.

And we learned that we -- they didn't have electricity in their school.  So, our videos were now changing to comic books designed by the kids.  And it really worked.  We followed them through 6, 12, and 18 months later.  And behavior of these sixth-grade learners was -- reduced their risk for HIV, all the safe sex that we wanted to happen.  And we got funded to follow through to 54 months later. And the study still worked. Behavior change was still there. We had a 90 percent return rate 54 months later.

So, we have -- and then we said do something with men because it's the men that drive it -- the HIV risk in South Africa. And so, we did the same thing.  We worked with the men, met with the community leaders, compare it, empowered them.  And we had to go to where they went, the shebeen.  Men in Africa go to the shebeen, so I went to the shebeen too. In the shebeen is where they drink and have fun with and understanding their culture.  So, we designed the intervention around that in Xhosa we trained them, and we did product tested in the English and then translated to Xhosa and did it with the facilitators.  It was very good.  We followed them for 18 months and it continued to work.

And so, last T going to wind down, what about now? So, now I'm doing this program at Drexel called Together -- called "We're Here Because We Care: Building Healthy Communities Together.  I'm going to slow down now because I'm ending.  And so, I went into the community to decide what was going on. Instead of doing HIV, it was around behavior change.  It was around conversations.  It was around talking to people and listening to their voices about what their health concerns were, and their needs were.

And I learned from them that -- one guy said to me, "Dr. Jemmott, thank you for including us, because sometimes we're on a menu."  So, I said, "What do you mean?"  He said, "We want to be at the table.  Because if we're not on a table because we're eating, we're on the menu."  So, that was an important statement too.  And another thing that I realized is too, you remember the play "Hamilton?" In "Hamilton" Burr was pissed off that he wasn't invited in the room when Jefferson invited Hamilton. And what did he say?  "He wants to be in the room where it happens, the room where it happens."

And so, we got to make sure they're in the room where it happens.  And so, we did this.  We created the Community Wellness Hub.  And then we went back to the community again and talked about cancer and created a Cancer Wellness Hub.  But it was based on the voices of the people.  And then I'm saying this to say, imagine if our research and training amplified voices and built bridges towards a more inclusive future across the world using trust, time, team, talk, talent, transparency, tenacity, and tireless faith. I call that impact.

So, in closing our last words.  When we feel a sense of belonging, it is not because we are the same as everyone else, but because we have been accepted as who we are. That's inclusion.  So, what I want to say to you today, let's work together to amplify voices, build bridges towards a more inclusive future.  And remember, process is just important as outcomes.  Let's be the little red engines that could.  Let's do this work together.  Thank you.

Let me get some water.

RINAD BEIDAS: How am I going to follow Dr. Jemmott singing "Hamilton" up here?

That's not fair.  It is a true pleasure to be here today and to stand on the stage following Dr. Shim and Dr. Jemmott.  I'm -- I want to just start by thanking NIMH for inviting me.  I got my first NIMH grant in 2009 as a predoctoral trainee. And I've been supported since then. And, you know, they -- NIMH has allowed me to amplify the voice of constituents in efforts to transform behavioral health delivery.  And I'm excited to share a little bit with you all about that work.  All right.

So, I always like to start my talks thanking all of the incredible people, the village that make the work possible that I'm presenting on today.  And this work really represents a community.  And this isn't even the entire community that has contributed to this work.  So, forgive me for not having an exhaustive list.  But then I would spend my whole 20 minutes on that, so I won't.  But I just think it's really important to note that I'm up here presenting, but that this is really the work of our community.

I also like to begin my talks with a positionality statement because my identities and my lived experiences very much shape my perspective and the work that I collaborate and lead.  So, I'm a first-generation immigrant.  I moved here when I was 2 years old from Jordan with my parents.  I identify as a woman.  I'm a clinical psychologist and an implementation scientist.  I'm a mother and an advocate.  And my why, what gets me up in the morning is my excitement about the potential for implementation science, which I'll be telling you a little bit more about, to serve as a tool to amplify and advocate for our communities in pursuit of social justice and population health for all.  And so, I'm excited to be here to share a little bit more with you about that work.

So, my talk today is organized into four chapters. I'll start by saying a little bit about why it's so important to include the constituent voice in our work. Although, the previous speakers did an excellent job already laying that out for us.  So, I'll keep that brief.  I'll also share some of my thoughts about when we should start thinking about including the community voice, hints, always and at the beginning.  And then who and how by providing some examples from some of the work that our team has led.

But first, the why.  And I do like to give the main takeaway upfront in case you get distracted by email or other things that are happening.  So, you'll learn this over the course of our time together. But I just want to amplify that it is a research imperative for us to center and amplify the voice of all constituents who are affected by our efforts to promote health and wellbeing across the research continuum.  And the reason that we need to do so is because it allows us to prioritize the conduct of ecologically valid, high-value, and as Dr. Jemmott said, impactful research that improves the lives of all people.

Here's another way to say it, and I'd like to see no more of this.  A quotation at the end of a body of work.  We've developed this thing that works in some very controlled -- in very controlled settings for some but doesn't work in the real world for all when we go to implement it because it didn't include end users and recipients in our discovery process.  And this impossible coffee pot is an example of that concept, right?  We don't want to end up with interventions that look like that. We want to end up with interventions that are ecologically valid, intended for the context in which they are meant to be delivered.

So, I already kind of gave you a hint about when I think we should be thinking about including the constituent voice in our NIMH-funded research.  This illustration demonstrates the translational pipeline of intervention and implementation of science.  I'm always going to say that we should include the constituent voice always and as soon as possible in this process.

So, early on in the kind of intervention development stage, we might start by doing some pilot work.  Then that's typically followed by rigorous trials that prioritize internal validity and try to elucidate the mechanisms through which our interventions work.  Then followed by effectiveness studies, which are typically conducted in more real-world contexts, prioritizing external validity.  Then leading into dissemination implementation trials, which is where I spend most of my time thinking about, which is research on how the intervention can achieve wide scale and impact.

And so, I would like us to all think about the inclusion of the constituent voice from the very beginning.  And I actually think Dr. Jemmott's example of how she and her team developed interventions with the community from the very beginning is such a beautiful illustration of that concept.  Unfortunately, we often don't see that happen until later in the pipeline, although newer research addresses this.  And that results in impossible coffee pots.  So, it's really important to make sure that we're thinking about this from the very beginning.

Imagine if -- using Dr. Jemmott's language -- we included end users when we were starting to think about a treatment that we might deploy in the community for post-traumatic stress disorder.  The people who will be delivering that intervention, what would it look like?  How would it look different than the interventions that we develop within the academic context that don't include the constituent voice?

Our team focuses on the end of that translational pathway on the science of closing the gap between what we know and what we do. Raise your hand -- I'm going to make it a little interactive.  I know there's some people online.  But raise your hand if you've heard the term implementation science before.  Oh, my God, this is so exciting.  20 years ago, there'd be like two hands raised in the room.

So, we spend billions of dollars -- sorry, I get excited when I start talking about it.  We spend billions of dollars on discovery.  But we spend far less thinking about how to actually implement that -- those discoveries so that everybody can have access and benefit from them.  And so, this is the textbook definition, the study of methods to promote the adoption, integration of various things into routine healthcare and public health settings to improve population health for all.

So, the examples I'm going to give you on the who is really going to center around this implementation science space, since that's where our team works.  And so, when we go into various contexts and we're co-creating and partnering with communities around implementing evidence-based practices for gaps that they might be experiencing in their communities, it's really important to ask yourself who are the constituents in implementation research?

And this is not an exhaustive list, but this includes some of the constituents that -- of voices that we'll want to be amplifying in that process, including people with lived experience, clinicians.  And I'll come back to why that's got a purple box around it in a moment.  Organizational leaders, community leaders, policy makers, payers.  And I'm sure if I asked you to raise your hand, you'd be able to share additional people that -- groups of people that are left out here. But this is the kind of exercise that we want to go through.

And implementation science tends to focus on clinicians, broadly define clinician behavior within organizational constraints. And so, a lot of the work our team has done has really focused on centering the voices of clinicians.  And that's what I'll be sharing with you all today. Although the voices of all of our constituents are very important.  And one of the things I'd like to see the science continue to develop around is how we center the voices of many groups and prioritize many perspectives while also needing to kind of move forward and come up with a decision that meets everyone's needs.

More recently -- and this is in the implementation science space, of course borrowing from decades of community-based participatory research -- is processes to systematize how we think about engaging constituents in the process of implementation research.  This is a new publication that came out in 2023 by Potthoff and colleagues called I-STEM.  And it really walks through the various stages of how to think about engagement from the beginning to the end of work, as well as how to think about that constituent mapping process.  When I started this work earlier on in my career, I didn't have as systematic of an approach to thinking about which groups to prioritize in the process of doing ecologically valid implementation research.

So, now I want to tell you a little bit about how we've done this work.  And then I will pass the baton onto my next colleague.  And I do want to talk a little bit about the guiding values, which again, Dr. Jemmott covered beautifully in the Ts.  But I really want you to think about partnership as being the bedrock of how we do all of this work because our communities are filled with power and wisdom.  And it's really important for us as scientists to bring humility, genuine curiosity about how we can be helpful and how we can partner and understanding of power dynamics and leading with the community needs.

And I've shared here just some of the questions that I try to bring to the table when I and our team meet with our community partners.  My favorite question is what keeps you up at night?  So, I don't go into a community and assume that the thing that I want to implement is the thing that we should be doing but rather want to understand what their priorities are.  And often that means connecting them with other colleagues who have expertise in that space.

How can I be helpful?  What are your priorities rather than some of these questions? And I have heard people ask these questions of community partners.  I've been in rooms where I've heard people say things like, "Why can't I just do my study in your setting?  Why don't your staff want to do it?  I don't understand.  This is really important."  So, I think if we bring the community voice much earlier in the process, we won't end up in these situations where we spend a lot of money on things that then can never really be deployed in context.

I want to give you a little bit of context for the example that I'm going to be giving you.  And this actually comes from work that I did when I was in the city of Philadelphia.  So, I lived in Philadelphia for 17 years.  I recently moved to Chicago, so I'm in the process of developing partnerships with colleagues in Chicago.  But Philly will always have my heart.  And I had the great privilege of doing work for over a decade.  And I do miss this view.  Philadelphia is a large city.  It has a population of 1.5 million people.  And it is a city full of assets.  There's a prolific Mural Arts program.  This is one of my favorite murals at 40th & Chestnut in West Philadelphia. Partnership between the Department of Behavioral Health and the Mural Arts program.

But it also as a city has many challenges, including the highest poverty rate in the 10 big cities in the United States. High rates of violent crime and gun violence and deep inequities by ZIP code.  Babies born in one neighborhood just a few miles away from another neighborhood will live 20 years longer than babies born just a few miles away.

And as I came into the partnership, I joined a group that had had a long-standing partnership with the city of Philadelphia. That was the Penn Center for Mental Health at the University of Pennsylvania, which is where I met Dr. Jemmott for the first time.  And it was a really incredible opportunity for me as a fairly early career researcher to join and understand what it looks like to have a true partnership between scientists and policymakers and payers.  And this partnership was really around implementing evidence-based practices in the public behavioral health system in Philadelphia, which is a large system serving over 150,000 individuals a year through the Medicaid payment system.

And the first commissioner who kind of launched this real focus on implementation of evidence-based practices was Dr. Arthur Evans.  And then subsequently, our commissioners who came after Dr. Evans shared this commitment and this idea that in the public behavioral health system, everyone should have access to the highest quality care, including many of the evidence-based practices that were developed in the backyard of our community.

And so, this work started with evidence-based practice initiatives in the early 2000s which were separate initiatives around implementing trauma-focused cognitive behavioral therapy, cognitive therapy for depression across our hundreds of organizations serving folks in the public behavioral health system.  That was then followed by Epic, which was a centralized infrastructure created within the system to support those evidence-based practice initiatives when it became clear that there were a lot of learnings that could be learned across these initiatives that were siloed, given the current structure.

Which then led over time to the creation of a designation system for organizations delivering high-quality, evidence-based mental health care, including an enhanced rate or a financial incentive for the delivery of those services.  And I think what's really important is that this work that I'm talking about was a system driven.  The system leaders decided this was important and they partnered with scientists to take an iterative approach to implementation to continuously learn to improve implementation.

So, as I mentioned, I had the great fortune of spending over a decade studying clinician behavior change as part of a naturalistic observational study.  And the main point I want to make about this work is that the most meaningful questions we pursued and what we learned came directly from our constituents.  Any good idea our team ever had come from talking to our clinicians, to the families being served to our policy makers.

And initially, the idea was to study a set of clinician factors such as their knowledge and their attitudes.  Study organizational factors such as leadership, the climate, and the culture of the organizations, and how that was related to implementation of evidence-based practice in the city of Philadelphia at scale within the context of the creation of that centralized infrastructure that I mentioned, that Epic group.  And so, you know, we were really able to take a magnifying glass to the infrastructure of public behavioral health delivery within the context of Philadelphia and learn some really powerful things from the clinicians that I never would have known going into this project if we hadn't listened.

So, just to give you an example of that, one of the things we heard that was overwhelmingly clear in the qualitative interviews that we did with clinicians and administrators, was the immense financial strain and stress associated with delivering behavioral healthcare in the city of Philadelphia.  So, we heard things from our organizational leaders like, "We are losing our shirt."  We hold our breath, and we pray when we pay people every month because we're not sure that we're going to be able to make ends meet.

At the same time, that work started leading us to think about, well, if the organizations are this stressed financially, are the clinicians this stressed financially?  And we learned in quantitative and qualitative work that financial strain and therapists were associated with turnover in these organizations, which is already a problem in public behavioral health care delivery.  And also, that the clinicians reported having more than a hundred thousand dollars in debt and a third went without their own mental health care because of financial considerations.  So, this work really allowed us to kind of change the lens of what we were focusing on based on what we were hearing.

And so, really listening to our clinicians helped us kind of change the narrative about perhaps why it's difficult to implement evidence-based practices.  Because if you don't have that context, if you don't amplify those voices, and you look at how difficult it is to kind of implement new practices, try to offer the highest quality care possible, you might wonder, well, why aren't clinicians doing X, Y, and Z?  That's the best practice.  They should be doing that.

Well, it helped us learn about Maslow's hierarchy of needs for community mental health and how difficult it is to deliver high quality care.  And you can see how that changes the frame when you start listening to the voices of those who are impacted by implementation.  And that work also led us to have a different way of thinking about how we might support clinicians then.  What if instead of assuming I as an implementation scientist know what clinicians need to be able to deliver high-quality care, what if instead we asked them directly and empowered them as the experts around how they might be best supported?

And this is still probably among the top 5 days of my life as a researcher.  We had an idea to deploy something called an innovation tournament, which is a participatory approach.  It's kind of like American Idol, but with ideas.  So, we pushed out a crowdsourcing tournament among all the clinicians in our system, thousands of clinicians asking them what do you need to implement evidence-based practices?  And this is the day where the six winning clinicians with their ideas came, and we celebrated them in a gala.  Our Commissioner Jones was there to give them their plaques.  And they brought family members.  They brought their bosses.  It was a really meaningful day to really center the voice of our clinicians.

And just to give you a flavor for what one of our clinicians came up with, which is truly not something I would have come up with on my own, is the better waiting room experience.  So, our clinicians explained that often their clients would sit in a chaotic waiting room where it was difficult to feel centered, to feel relaxed going into the therapeutic environment.  And what if the therapy waiting room was a place where somebody could start to do the work and be ready to go into the therapy session and be better poised to kind of spend that time together working in evidence-based practice. Also, financial incentives came up as a big theme, which might not surprise you based on what I shared earlier in some of the work.  And that was integrated into the Philadelphia approach to think about how best to support clinicians and organizations.

The last kind of lesson learned that I want to share with you all is make sure that you're centering the voice of all constituents. And when you realize that you may have missed a group, have the humility to learn.  And, you know, continuously learn about how best to approach these matters. So, we also have a different body of work that I don't have time to present on today related to implementing secure firearm storage and pediatric primary care as a universal suicide prevention strategy.

And we -- when we did that constituent mapping exercise, we came up with eight constituent groups that might be impacted by the implementation of such a program.  We did 70 qualitative interviews, lots of quantitative work. And as we started talking to people, we realized we'd missed a group.  And that's folks who were firearm safety course instructors, people from firearm rights organizations.  We needed to hear their voice because it informed the implementation of our program, which has been quite successful.  And hopefully, at a future meeting I can share the results of that. But without doing that work, we would have missed a crucial group who really helped inform our implementation. So, remember we have to keep learning and we have to be open to all voices.

I've already shared this with you.  This is the main takeaway.  We really must center and amplify the voices of all constituents. And that's why I was so thrilled when I was invited to come speak today to share a little bit about some of the work that we that we've done.  So, thank you so much for your time.  And I am done.

CARLOS LARRAURI: All right.  Good morning.  My name is Carlos.  And first off, let me start with the thank yous.  Thank you, Dr. Gordon.  Thank you to the NIMH.  Thank you to my esteemed colleagues for the opportunity to share a stage with you. Today I'm going to talk about leveraging lived experience in mental health research.  So, I thought it would be -- where's the -- yes.  Got it.  Thanks.

So, I thought it would be befitting to start with a personal anecdote to add a kind of narrative touch to what is often these conversations about science and research.  And we'll get to that.  And the inclusion of lived experience in mental health research is embedded in my narrative.  So, I want to take you back to my seventh-grade science class where I had the opportunity to write my first scientific research paper.  And we could choose any disease we wanted.  And in the moment of, like, cosmic foreshadowing, I chose schizophrenia.

I had read the book, "A Beautiful Mind" and saw the movie by John Nash, and I thought it was just fascinating and I wanted to learn more about it.  So, this was in the days that internet was still nascent.  So, I went to the library and actually scanned images of enlarged ventricles and read up on chlorpromazine, the first antipsychotic. And I put my paper together and then I sent it off to a family friend, a professor of psychiatry at Harvard, Dr. Joe. Who said, "Great job, Carlos. This is an A plus paper.  Maybe you have a future in this."

In another kind of moment of foreshadowing, it turns out that my interest in the brain and the science did develop.  And I graduated high school, a national Hispanic scholar with acceptance into a bachelor's in science medical degree program at Ohio State University.  But unfortunately, as is the case with many mental health issues, the onset of a psychosis surfaced during my college late adolescent years.  And I began to hear voices, have delusions of reference thinking the TV was talking to me, messianic delusions thinking I was a prophet or messiah hearing angels.  Ultimately, the path to becoming a physician was foreclosed.

But I was fortunate that I did have a family friend who knew something was off with my behavior and called my mom and said, "You know, something's off with Carlos.  You should talk to him.  You should come to campus."  And my mom met with my academic advisor.  And my academic advisor said, "Carlos, you're an adult.  You have the right to privacy.  You don't have to share anything that's happened to you on campus," ostensibly because of FERPA.  And I said in a rare moment of insight and lucidity, "You know, Dr. Clark, I have a Cuban mother.  I've never really had a right to privacy."

So, all kidding aside, that was a turning point. And that did open the way for an honest conversation about mental health.  Ultimately, the same family friend who gave me an A plus on my psychiatric -- first psychiatric research paper was instrumental in helping me get a diagnosis.  And I saw a team of interdisciplinary professionals at the at Academic Medical Research Center and was diagnosed with adult-onset schizophrenia.  Fast forward about a decade later, my story comes full circle in some ways.  I did become a clinician.  I'm a psychiatric nurse practitioner.

And I am finishing my law degree at the University of Michigan and my master's in public administration at the Harvard Kennedy School as a Zuckerman fellow.  But more importantly, I've had the opportunity to leverage my lived experience to get back to mental health research.  In my role as a former board member of the National Alliance of Mental Illness, I had the opportunity to get involved with the Accelerated Medicines Partnership Schizophrenia, which is the largest study in the clinical high-risk population -- people at risk for psychosis or schizophrenia.  And also, the Schizophrenia Spectrum Biomarkers Consortium, where I'm a colleague with that family friend, Joe.

So, I think that's part of the value proposition here.  It's not this -- that, as you've heard, embedding lived experience leads to better research and science.  But it also allows people like myself to make meaning and find purpose in our lived experiences.  Helen Keller said, "The world is full of suffering, but it's also full of overcoming of it."  And I would say it's true.  And it happens because we find meaning and purpose in our suffering, in our experiences.

So, it comes full circle.  Again, I'm a clinician.  I am back in the Midwest, this time at Michigan instead of Ohio. But more importantly, I'm that curious person once again, fascinated with the brain in mind and with the hope that science can lead to a better future, much like a kid, you know, wondering about the stars or the universe gets the opportunity to work for NASA one day. As someone interested in the inner universe, the opportunity to lead the scientific frontier for schizophrenia treatment is just some long odds and mindboggling for me still.

So, now let me jump into this -- the formal presentation.  So, today I'm going to talk about the impact of lived experience, briefly looking at the scientific and ethical basis.  We're going to do a deep dive into the AMP Schizophrenia project where I'll talk about the work we're doing.  And again, the value we bring to stakeholders.  And then I'll briefly touch upon at a high level, best practices for incorporating lived experience.

So, you've already heard a little bit about patient-oriented research and how it improves, you know, feasibility, adoption, implementation, sustainability, and relevance.  In the context of psychosis, this goes back 40 years as my literature review suggests.  And it's also a matter of diversity, equity, inclusion.  Recognizing that these lived experiences, people with disabilities are a diverse population and that it can contribute not just to the changing and the development of better science, but the changing of the science culture and the research environment.

I would suspect that I'm not the only one in this room with a mental health issue, but I'm sure many of you have faced, you know, precarious decisions regarding your career, whether to diagnose or whether to disclose or not to disclose.  And the hope is with embedding people with lived experience, we can change that culture where people are more forthcoming about their own lived experiences and how it can actually improve science.  And this also will lead to the support of hopefully ethical implementation of precision psychiatry and clinical care.

So, I think that's a bit about the scientific overview just briefly on the ethical basis.  I think it aligns with the four pillars of bioethics, beneficence, or doing good not doing harm, promoting choice and justice.  Dr. Shim talked about the feminist standpoint theory, and that's very relevant to this concept of epistemic injustice, which is that some people from marginalized groups are denied opportunities to create knowledge and derive meaning from their experience.  As the maxim, the Disability Advocacy Community suggests Nothing About Us Without Us.  Participatory research ensures that research is done with and not on people with mental health conditions.  And this can challenge the traditional knowledge hierarchies and reduce exclusioness -- exclusion and powerlessness.

So, let me talk about the work, which is the thing I'm most proud of and the highlight of my career thus far.  Again, the Accelerating Medicines Partnership - Schizophrenia is an over a hundred-million-dollar investment, public-private partnership in schizophrenia research that aims to develop biomarkers and understand the mechanisms for better treatments for schizophrenia.

Right from its inception -- and I have to thank Brandon Staglin from One Mind for these slides and for some of the slides later on -- people with lived experience in the advocacy community played an instrumental role in setting the foundation for this initiative with the North American Prodrome Longitudinal Study, which was used to -- which was developed to develop a -- predict the onset of psychosis and help-seeking youth. One Mind catalyzed and brought together various stakeholders and also helped fund this research.  And this formed the basis for the AMP - Schizophrenia biomarker study.

NAMI again played another instrumental role in catalyzing and convening stakeholders with the Advancing Discoveries Summit. In 2014, NAMI brought together academia, advocacy, industry, and government to work together to develop cross-collaborative, large-scale mental health research initiatives.  The first meeting regarding AMP Schizophrenia was held in 2016.  But it took several years of concerted and persistent advocacy and developing the political will ultimately to launch the effort 4 years later in 2020.  And to this day, NAMI continues to hold the Advancing Discoveries Summits to develop breakthroughs in mental health research.

So, one of the things that I think makes AMP Schizophrenia unique is that lived experience is baked into the governance structure.  It's led by myself, someone with lived experience of psychosis as -- along with Linda Brady, you know, scientific expert, and someone who's been an exemplar of both expertise in science and also compassion in terms of inclusion for people like myself.

But it's funny because this was sort of an election.  I was going up against some individuals with, you know, excellent credentials, M.D., Ph.Ds. And I have yet to add -- I will add more letters to the end of my name soon.  But I thought, like, well, what am I going to -- you know, someone basically tossed my hat in the ring for me.  And I said, okay, sure.  And, you know, it was a lesson in learning that democracies can be surprising and messy. But I was elected --

-- as I think everyone in this room is aware of. It's sometimes -- but I'm very happy it turned out that way because, again, this has been the highlight of my career.  But I think that inclusion of lived experience kind of grounds the research initiative in our experiences and reminds the scientists what really matters, the experience of what people living with these conditions are.  It's not just about, you know, publishing papers, although important, or getting your h-index higher.  It's really about developing treatments that are going to improve the quality of life for people.

And in that role, we, you know, review the research plan.  We -- and we'll go more into that.  And I think what's made it very helpful has been a culture of open door and transparency, where really people with lived experience are allowed to participate as much as they'd like to.  So, we review the ongoing study protocol.  We review the study protocol on ongoing conduct.  You know, scientists like to sometimes chase their muses and they want to add bells and whistles to the project.  But again, we remind people that there's patient burden for some of these procedures or assessments.  We also ensure that the ethical use of sensitive digital data and data sharing processes are done thoughtfully.

I want to make this all very concrete with an example from John Torous, who's a colleague in the AMP Schizophrenia study. "The digital assessment platform used in AMP Schizophrenia mindLAMP has been built over the last 5 years with direct co-design and over 200 updates.  So, its design reflects the input of many stakeholders with lived experience.  This involvement coupled with actively sharing research data from the app back to users, has helped to build trust and contributed to the app's robust uptake by more than 80 percent of study participants.  The surprisingly strong engagement is now yielding useful data to support the AMP's aim to lay the groundwork for developing original medicines to treat people in the earliest stages of schizophrenia."

So, as you can see co-participation, co-design really has helped AMP Schizophrenia lead the way, especially with respect to digital phenotyping.  We've also been sort of a marketing engine for the, if you will, for the initiative. We established the website outreach and working group with its mission to develop and maintain AMP Schizophrenia's online presence.  For -- outreach not to just clinicians or scientists, but also the CHR population and their families.

And in this, we've seen significant referral traffic from NAMI indicating engagement with those with lived experience and their families.  And again, we've been getting the word out, not just in peer-reviewed publications but also podcasts, articles for the advocacy community and for family members. And we continue to do that.  So, again, I want to thank Brandon Staglin from One Mind for these slides.  And I want to talk a little bit about kind of high-level, best practices for engaging lived experience.  These are brought to you from Transforming How We Work: Reflections from HBGI's Lived Experience Council.

So, we've heard a little bit already about the value of participation -- patient participation and research.  Improving research quality and accessibility. Making more tangible outcomes for the intended population.  Hope and empowerment for service users and advisors as my personal kind of narrative and anecdote at the beginning of the presentation hopefully highlights as a dimension of this that I think is important as well.  And decreasing stigma amongst the community and enhancing trust. And stigma not just for the people we serve, but also for researchers and the culture of science.

So, we'll briefly look at three kinds of high-level factors: Culture; creating a welcoming environment to engage in a robust way; systems.  You know, we like to think about systems and processes as scientists and as -- certainly as lawyers, unfortunately.  And ensure that your team -- and then resources.  Ensuring your team has the resources to support lived experience participation fairly and equitably.  So --

On the point of culture, I think there's two things I want to highlight here.  Which is that, you know, people with lived experience bring a broad breadth of professional skills.  Some of us are clinicians and advocates.  Some of us are researchers and people with lived experience.  So, it's important to see the whole identity and not just think of this as checking off a box or some tokenistic sort of after-the-fact gesture. But to do so in a meaningful way means to co-design these roles with the people themselves, with the community.

I also want to say that culture, I think is a sort of -- is something that actually does trickle down.  It's a sort of top-down force in institution.  So, it's important for embedding lived experience into leadership and getting buy-in from leaders to change the culture of science and institutions and research.  Again, we want to think of processes and procedures for embedding lived experience, whether that's advisory panels or engaging key thought leaders or advisory boards.  You want to think about systems to embed lived experience.

And resources are an important factor.  You know, there's resources at the National Health Council for calculating the fair market value for lived experience engagement. We like to think of ourselves as experts by experience.  We have experts that are scientific or technical, but we have wisdom that comes from living and succeeding with these conditions.  So, ensuring that, you know, people with lived experience are paid fairly and competitively for their expertise is important.

And, you know, I just want to end with a gratitude. I want to thank the scientific community.  Again, your research is a hope for many of those afflicted.  And I want to -- and -- excuse me.  And I want to reiterate that I hope by sharing my story and adding the kind of personal as well professional perspective, that reminding you that your work really matters.  And I hope to, you know, stoke your fires for this work.  And my vision for the future is hopefully one where, you know, co-participation and co-creation is the norm in mental health research.  So, again, thank you all for the opportunity to share a little bit about myself and my work.

JOEL SHERRILL: Thank you.  All right.  Thank you, Mr. Larrauri.  Now, I'd like to welcome back Dr. Jemmott and Dr. Beidas to join us on the stage here. And we'll have a moderated discussion with questions from our live and virtual audiences.  I believe there are speakers on either end of the auditorium here. And some of our colleagues will be helping feed us questions that come in through the virtual portal.

And as the panel is assembling here, I would like to just thank our presenters for so thoughtfully and so thoroughly illustrating the importance and the value of engaging partner perspectives in research and for sharing models for promoting inclusion and community engagement in really authentic and meaningful ways.  So, we're looking forward to some additional discussion.  Okay.  Is this on?


CARLOS LARRAURI: Check, check.

JOEL SHERRILL: Okay.  I think we're wired.  Okay.


JOEL SHERRILL: And again, I believe we have speakers on either -- or microphones on either end of the auditorium here.  So, while we're waiting for a question, maybe I'll kick it off with a question.  So, we heard three complementary models with some common elements on methods for engaging the community.  And, you know, I think it's often difficult to find resources to guide research teams and the inclusion of people with lived experience and others with other relevant knowledge into the research enterprise, the hypothesis generation, the research design, and the governance.  And I want to give each of you the opportunity to comment on what you think is the best way.  What would be the best methods for getting -- sharing that knowledge about how to accomplish and how to integrate this into -- meaningfully into research programs?

RINAD BEIDAS: You want to start, Dr. Jemmott?  Do you want me to start?

LORETTA JEMMOTT: [affirmative]

RINAD BEIDAS: Okay.  This on? Yes?  Okay.  Thank you for this great question.  I think there is probably a multi-pronged approach to ensuring that this can happen. And I think, first of all, acknowledgement that this is meaningful, important work, and that there are methods to allow for this is, is the first step.  I think that first, this type of training needs to be embedded into scientific training from the very beginning.

So, when I got trained as a Ph.D. in clinical psychology, I didn't have any training in how to amplify the voice of people with lived experiences or any other kind of community partnership approaches. And so, that's kind of where we want to start upstream, so we make sure that down the line people can do effective partnered work.

Second, I think that to really learn how to do this work well, there needs to be more kind of embedded models.  So, you may have noticed in my presentation that I mentioned that I joined a group that was already a part of a partnership with the community.  And so, that really, I think helped me learn from my colleagues in a mentored way how to do that most effectively.

The third thing I'll say is just that I think that our institutions need to have specialized resources that support folks who want to do this kind of work.  So, at Northwestern, we have a Center for Community Health.  And there's all kinds of resources available to folks to learn how to do this work well.  So, those are some initial ideas, but I'm sure my colleagues will have additional ones.

LORETTA JEMMOTT: Thank you.  Can you hear me?  I agree with you what you said.  I think -- thank you for the question again.

JOEL SHERRILL: Hold it close.

LORETTA JEMMOTT: Can you hear?


LORETTA JEMMOTT: This is better.  I think that first we really got to be committed to doing it.  So, if the -- if we're not really, committed to doing the work, it's not going to happen.  And so, commitment comes in a lot of different ways.  Commitment can come in the funding opportunities that comes out of this.  That's one way.  Commitment can come from the people who are already in the field doing the work, being committed to doing some stuff that's really critical to hear the voices of the people that we're trying to serve.

You know, you really got to want to do this, and you got to understand the significance of it.  Because if you're trying to help people change their behavior and to improve their health, then you got to really understand who they are, where they are, their lived experiences, their context of their lives. And so, include that in your work that you do.  Because if you don't, it will not work.

And the next thing you got to do is teach people in these schools.  You know, in the undergraduate school, graduate schools' programs got to embed these things into how we do our work, how we do our science.  Because if -- it's not going to happen if they don't. And so, I really believe that training is critical.  I think that changing our mindset is critical.  I think that wanting to do something to empower people is critical. And I think that it's important if we want to really save the lives of people who look like me, look like others who are marginalized, we got to really want to do that work in a way that is meaningful.

So, my suggestion is bringing them to the table. Engage them in a way that can help us do the work.  Stop doing work without us, doing work with us.  They're so tired of us.  So, how do we change the process to engage us more so that we can be a part of what you're trying to do for us?  Team. Bring them to the table.


LORETTA JEMMOTT: Bring us to the table.

CARLOS LARRAURI: All excellent comments.  I think as someone, you know, in this space who maybe doesn't, you know, doesn't have a Ph.D. yet --


CARLOS LARRAURI: But, you know, sometimes there's an information asymmetry and it can be -- and it can feel, you know, a little out of place. And sometimes I want to be a kind of a wallflower.  So, sometimes, you know, building it isn't enough.  You have to create that cultural change where people's voice feels welcome. And for me, in my case, you know, Linda Brady will offer gentle nudges from time to time.  "Well, what do you think about this?"  And it's easy to just kind of sit back and defer to the scientific technical expert.  So, there's that cultural element.  It's important to know not -- what to not do, which is of course, kind of anything tokenistic or last minute, like, oh, we just need to throw someone with lived experience on this to check a box.

But what I'm seeing from the advocacy community is, you know, people recognizing that these are immense professional and personal development opportunities, and there needs to be a pipeline.  So, you know, the Healthy Brains Global Initiative and the Global Peer Network with Charlene Sunkel are developing sort of a roster, if you will, of people with lived experience that also have, you know, technical and scientific expertise.  Perhaps it's in implementation science.  Perhaps it's in community engagement.  Perhaps it's in, you know, other aspects of research.  So, I think this will -- this kind of role hopefully becomes a bit more professionalized and there's processes for getting the most out of it.  Yeah.

JOEL SHERRILL: Great.  Thank you. I'm sure we'll be coming back to these themes of lessons learned and best practices throughout this discussion. But I believe we have a question over here.

RENA D'SOUZA: This is on?  Yeah.  Hello, everyone.  I am Rena D'Souza.  I direct the National Institute for Dental and Craniofacial Research.  Want to congratulate you, Josh, on a fantastic term as director.  Your intellectual horse bar at those meetings will truly be missed.  So, I congratulate you.  And Dr. Shim, you simply took my breath away [laughs].  And for the panel, though -- yes.

Yeah.  The emphasis on connecting the community and the first steps that you modeled for the rest of us are really truly in inspirational.  As an oral health professional who faces -- our profession is -- probably has the highest level of disparities in the nation, perhaps after mental health.  And so, I wondered how you felt about in literally embodying the whole person health approach and engaging other health professionals in your community efforts. Because as you know, there's a lot. If you don't have the mental acuity and skills, you're not going to take care of your body.  And so, I just wondered how you all felt about that. And because we very much would want to collaborate on future initiatives with you.

LORETTA JEMMOTT: There's different -- thank you for that question. There are different approaches that can be utilized if we are talking about community-based approaches to this model. I think that when we think about other issues other than mental health, other than HIV, we know that there are tons of things that impacted the community.  And so, what I learned is that when we did the community engagement work around hearing people's voices being here because we care, it really got to the point that they were able to tell us those things.

And so, asking questions about what is important to you?  What are some of the health issues that impact your community?  What about you?  What about your family?  And people just shared, and they shared, and they shared and oral health was there. And so, what you had to do is then okay, we have these issues, now what do we do about them?  The people shared their voices and so we got to do something about that.  And so, it's important to first have your voice out there.  And two, to be at the table when it happens.  And then work with funders to try to help us do it the right way.

RENA D'SOUZA: Correct.

LORETTA JEMMOTT: So, your voice is important, and we just got to really amplify it in a way that makes sense so that we can make sure that those needs get met too.  Power, power.

Voice, power.  Inclusion, power.  Impact, power.

JOEL SHERRILL: All right.  Excellent.

CARLOS LARRAURI: Yeah.  You know, I think the word, like, holistic is often thrown around as a buzzword.  But I think it really can have a special meaning, especially in mental health and as you mentioned, in oral health, in the sense that, you know, you have to see -- you have to meet the person where they're at. You have to see the whole person.

You know, as a clinician, there's a tendency to want to just assess for compliance with medication or with side effects. And I see that as a -- as someone who still sees patients, you know, one day a week.  But if you take the extra time and effort to try to meet the person where they're at, listen to them, frame, you know, treatment.  And this is probably true for engagement with, you know, mental health research or with, you know, oral hygiene research.

But frame it in terms of what the person hopes to get out of it.  What are their values?  What are their goals?  Is it contributing to their community?  Is it giving back to science?  Is it, you know, getting access to better care or treatment?  I think that that is what we mean by, you know, holistic.  And I think some, you know, people call it the shared decision making in the clinical context.  But I think that's -- I think that really gets at it.  Yeah.

RENA D'SOUZA: Yeah.  Thank you.


RINAD BEIDAS: I just want to amplify some of the points that were made.  So, I do work in implementation science across areas.  And, you know, I think it -- we have a somewhat kind of siloed system. So, when I sit down with a community, I'm a psychologist by training.  Clinically, that's where my expertise is clinically.  That's what I have to offer.  But I can also connect my colleagues with other folks in other areas when what they bring up isn't mental health.  Now, today, most of the time when I talk with the community, mental health is a priority.  I think the more that we can kind of de-silo and work across, the more effective we'll be at it promoting whole health for all people.  So, I love your question.  Thank you for raising it.

Rena D'Souza: Thank you.  Let's put the head back on the body.


RENA D'SOUZA: Because dental, mental, hearing, and vision are not covered.


LORETTA JEMMOTT: And as a nurse, I really value that.  I'm a nurse.  And so, being a nurse, we understand the total body and the importance of what your question was.  And to make sure that as nurses we address that too.

RENA D'SOUZA: Thank you.  Appreciate it.

JOEL SHERRILL: Thank you for the question.  I'm sure the issue of the interdependence of issues that affect communities will continue to be a theme throughout the day.  Another question?

CARLOS LARRAURI: There's someone there.

JOEL SHERRILL: Oh, on this end.

AUDIENCE PARTICIPANT: Good morning.  My name is César Escobar-Viera.  Thank you all for your presentations.  They were very illuminating to me.  I have a question in terms of thinking about community in -- and in different contexts for communities.  Specifically, I'm thinking about online communities where -- which have been growing and growing and growing, and there's no reason to think that that growth will stop.

I mean, it's not just adolescents anymore. Those adolescents are becoming young adults.  And as we grow -- we all grow old and as we all mature, it's not unreasonable to think that online communities will expand to all age groups.  And those are places for individuals of marginalized backgrounds. I think people living with chronic conditions, people living with disabilities, sexual and gender minorities, undocumented immigrants to go and look for both formal and -- formal care, informal support.

And do we understand those communities? That's kind of where I would like to have your input.  Do we understand them?  Do we need more research focus on understanding the dynamics of those communities and how to leverage the power in those communities as well in order to improve mental health prevention, access to care, and other things.  Thank you.

CARLOS LARRAURI: I'll take a quick gander.  Yeah, I mean, I'm sure I'm not the only one here, but the first time I sense anything off with my mind or my body, like, Google's the first one to know and the online spaces before my family or my friends or certainly my clinician, who's probably the last in the chain.  So, I think absolutely we definitely need more research in that space.  I mean, one of the first places I looked for, you know, research and support outside of the physical space of a NAMI support group was, you know, Reddit and the online kind of crowdsourcing of the wisdom of people.  But I think that -- and so that's -- it's still frontier where there's probably not a lot of research in that space.  I think what it comes down to, though, is obviously there's a lot of misinformation out there also.  And anyone that's, you know, been on TikTok knows that as well [laughs].

But so, I think it comes down to, you know, teaching people -- consumers, you know, critical thinking as opposed to policing the information.  I think it comes down to people have to be able to learn and engage with scientific information and misinformation and disinformation that's out there as well in a way that's critical and be able to appraise it because you can't police it entirely.  But it can be a source of support.  And I see that for a lot of people in the advocacy community.  And some people it's -- it helps when they're not willing yet to go to in person.  When they're afraid to go to support group or they're not ready to talk about it in person. They prefer to chat about it over text message or get their information through a social platform.  Yeah.

RINAD BEIDAS: Yeah.  I mean, I think it's such a great question.  And I want to now go look in the literature a little bit more deeply. So, thank you for encouraging me to do so.  But I think the processes are probably still the same in terms of identifying kind of key partners within those communities, working closely with them.  I'm thinking about a colleague that I have, Dr. Alex C. Hogios [spelled phonetically].  And she's been working with influencers in -- adult survivor -- young adult survivors with cancer to share information in TikTok about wellness and further preventive care.  I think that's, like, a really good example of leveraging online community to educate in a way that is aligned with evidence-based practice and the power in that community.

LORETTA JEMMOTT: Thank you.  I want to add to that is that we want to take time to know who they are and really understand them because really, we can't do the work without understanding who we're talking about.  Because behind the scenes, folks are really going through a lot of issues, and we don't know.  And we want to make sure that we do something in a safe way that engages them.

It'd be great to do conversations with them at the table and bring folks together to talk about this issue so that we can make sure that we do the work that gives them voice and that we can do it in a way that is engaging so that we can create something that's good with them based on their voices and their needs.  And so, that's our area of research that really is open.  People should think about that.  You going to make me go back home and think about it too.  But it's really critical because there's a voice and there's a void that needs to be filled.  So, thank you for bringing that out.

JOEL SHERRILL: Great.  Thank you. Yeah.  Brings up the possibility of crowdsourcing that input from the constituents in the same manner in which they're seeking the information out. Great.  Question on this side now.

HALAEVALU VAKALAHI: Aloha.  I'm Halaevalu Vakalahi.  I'm the president, CEO of the Council on Social Work Education.  So, I'm a social worker.  Thank you so much.  This has been inspiring.  A lot of light bulbs went on in terms of these are some things that we need to actually take a closer look.  So, you all spoke about relationship and community, right?  That is our currency in a sense.  So, I think the question -- previous question about the whole person, the whole body, yeah, that -- that's what we do as people who are trying to help our community and from the community.  But I do have a question.  So, we have a workforce crisis, we have a retirement crisis, we have all kinds of crisis.  And I just wondered, you made me think about the local community, the communities that we do our research with.

Are we -- what is our role in terms of cultivating local workforce?  Because I keep thinking about that's wonderful, they're at the table.  But are we facilitating access to the development of a workforce that's from that community to help that community?  And I think that that's -- maybe that is beyond what we're talking about here.  But it's probably something we need to think about in terms of succession planning.

Who from the community are we partnering with and are we giving them access to opportunities for training, for education, whatever it might be, so that when we move out, when we retire out, whatever it might be, there is people there to sustain whatever efforts that were originally there when we came in.  So, just a question for all three of you, whatever thoughts you might have on that.

LORETTA JEMMOTT: I think your question is right on point. Creating sustainable models is critical and being able to improve people's lives and quality of life through the workforce program.  And so, in the community where we're working right now, we have the access to a workforce readiness program.  So, in our community that we are talking to, we really engage them, talk about their needs, their health, and their wellness.  But also, refer them so that they can get the other issues that we can help with work for readiness -- workforce readiness initiatives with jobs and opportunities, because they are out there.

You know, we have a -- what the issue today, I must say, I was just saying that it's hard to get people to work today. Everybody don't want to work.  So, people are -- you know, the virus has changed people's lives.  People want to sit at home, and they don't want to go to work on time.  People -- it's a really different world we have right now.  And so, first we got to get people ready to want to go back to work.  And so, if people really want to go back to work, we got to have something for them to do that.  So, we got to engage them in a way that helps them think about working again. What does work look like for them? What do you want to do?  And then connect them to the programs that are needed that are really in the community.

There are workforce readiness initiatives that are in the city of Philadelphia that we just got to partner with to be able to provide them.  And we have that at Drexel because we really have a workforce readiness program right in our building.  And so, we are able to link people in the community to the program and really do stuff. But then we have a digitally vibe because no matter what, everybody doesn't have a laptop, and everybody doesn’t have access to the programs that are online.  And so, we got to help deal with that issue too.  And so, the digital divide issue, working with workforce readiness, trying to get people to the table to get their needs met so that we can create sustainable models, is a critical component to giving voice to the voiceless and hope to the hopeless.

CARLOS LARRAURI: Sure.  Just, you know, we're -- you know, we're in a time where as you, you know, as you’re all aware, DI is under attack.  And I think it's back to Dr. Shim's presentation on the difference between equality, equity, justice, and so forth.  I think, you know, researchers with disabilities are probably one of the most underrepresented groups.  And what I'm seeing is a sort of groundswell movement by researchers that do identify with lived experience, Nev Jones for example, others who are fighting to try to change the culture of science and are -- and to be included at the table.

But I think that's one area of workforce development we can focus on is identifying those that have disabilities who want to be academicians, who want to be researchers in the mental health space and providing them with professional development opportunities and their stake at the table.  Yeah.

RINAD BEIDAS: I would only just add that I hope we can start earlier also and engage young people.  Earlier when I had the privilege of working with the city of Philadelphia around implementing trauma-focused cognitive behavioral therapy, we had a youth advisory board who helped guide us and we're partners in deciding how to deploy the intervention.  And many of them went on to do work in that area and they all as well had lived experience. And so, I think the earlier that we can engage young people, it's very meaningful.

LORETTA JEMMOTT: I just want to add, you did ask how do we do that?  And to answer your question, there are programs in your area that are workforce readiness programs.  So, it'd be important to connect the dots.  Connect with them and connect them to the community that you're residing in and the community that you work because they have the answers.  So, don't try to answer it yourself.  Align yourself up with the people in your community that are already doing this work and bring everybody together so that you can empower people to help change and improve the health and outcomes and get people jobs. So, it's there for you.  Just connect the dots.

HALAEVALU VAKALAHI: Thank you so much for that.  The BUILD program by NIGMS is one that I'm familiar with. That is -- that's workforce.


HALAEVALU VAKALAHI: You are trying to get young scientists to come in and really be in embrace and have a passion for it.


HALAEVALU VAKALAHI: So, thank you so much.

LORETTA JEMMOTT: Thank you for your work.


AUDIENCE PARTICIPANT: So, this is an online question that came in during Dr. Shim's talk, but I'm going to try and tweak it to sort of fit the panel better.  Many of you talked about working with people in communities and collaborating with people as they are and where they are.  So, the question is how to provide care and support for children brought up with without parents or with a single parent.  Which obviously, intersects a lot with incarceration and a lot of other health inequities.  So, how do you approach these challenges where like there's things you can control and things you cannot control to help provide both the best research, the best collaboration, and the best care?

LORETTA JEMMOTT: Wow.  We're sitting here saying that's a powerful question.  We're trying to figure out how to answer that one because that is really painful.  That is really a situation that we have children who are don't have parents.  We have children who are suffering.  We have children who are in need, and you know -- and so, how do we do that work?  How do we empower people to want to help to do that work?  And so, I'm going to de refer to you because I got to think about that one.

RINAD BEIDAS: Well, I heard it was a question for Dr. Shim.

LORETTA JEMMOTT: Where's the mic?  Somebody give her the mic, please.  Come on, Shim.

JOEL SHERRILL: I think she's putting that back on you, Rinad.

Nice try.

RINAD BEIDAS: I mean, I fundamentally think the processes that we talked about today apply to basically every situation.  And so, I would want to understand for those young people what communities they're a part of, what supports, you know, wrap around those communities, and invest in those.  So, whether it's schools or after school programs or faith-based organizations, you know, really understanding the context and the needs of those young people would be where I would start.  So, I think it's hard to answer the question without having that context.


CARLOS LARRAURI: You know -- again, you know, drawing from my lived experience, you know, my recovery, if it wasn't for my Cuban mother, you know, it's a buffer condition.  I wouldn't be here today.  So, I -- I'm acutely aware of how instrumental family is.  And the good news is most people have family support and can recover in their community when they're given the right support and resources. But there are some populations, some subset that are not going to have that family support for whatever reasons.

I -- I've heard stories in the global health context, for example, where the young person wants to get biomedical care, but their parents want them to get spiritual care and they're developing psychosis.  And perhaps, you know, both would be helpful, but there's that friction there.  So, you know, when people don't have family support to lean on, I think it makes the journey particularly tough.

But I think what we're seeing is people go to the online space, for example, to find community, to find the support.  I have a friend and her story is public, Cecilia McGough, a student with psychosis who's an excellent exemplar of someone who's created a community for young adults with psychosis who find, you know, like-minded people that they can get the support if they don't necessarily have it at home or with family.  But it definitely makes the journey of recovery much harder.  And especially so for minors who -- as opposed to adolescents or young adults.

LORETTA JEMMOTT: I think the community is really key to circle around them.  So, I don't know what community they're in or who you're talking about.  But they're -- wherever it is, there's a community that you can build upon to give strength and power and voice.  And so, there are people that really care too.  So, I would say identify the community from which you're working in and folks that are working there.  People want to do stuff.  There are families, there are parents, there are single women, there are people that really do want to do wraparound services and connect.  But because we don't give them a voice to do that, we still let the community down.  So, I would say try to figure out a way to get a community engaged in that process to get the needs met of the children that you're trying to serve. And it will happen.

JOEL SHERRILL: Okay.  Thank you. Okay.  It looks like we may not have any other questions.  So, I'm going to end with one final question and give you each an opportunity to answer before we break.  So, we've heard a lot today about how the evolution of these approaches for community-engaged research and for working with people with lived experience and other community partners in the research enterprise.  And we know that it's come a long way, right, from the sort of early days of sort of the advisory board, to some of the more meaningful ways of including people in research that you all spoke about today.

And I want to give you each final opportunity to talk about what are one -- some of the most important or lessons learned from your work that we should keep in mind as we continue to encourage the involvement of community partners in the conduct of mental health services research.

LORETTA JEMMOTT: Who wants to?  You want to go first?

CARLOS LARRAURI: Sure.  I guess one key takeaway for me is that this is an ongoing iterative process.  This isn't a one stop, check the box, and you're done.  This is -- you know, a meaningful community engagement is a relationship, and it takes time to build trust.  It takes time to heal the wounds of skepticism or mistrust that it might have been -- resulted of -- from historical malpractices.  So, just reminding yourself that this is a long game and we're -- you know, we've got to be in it for the long haul.  So, that's important.

RINAD BEIDAS: I hope that what you heard from me was the importance of intellectual humility.  Asking yourself who's in the room?  Who's at the table?  Who's not at the table?  Whose voice are we centering?  What are the power dynamics?  I think those are always really important questions that we have to be constantly centering and thinking about.  I just want to share a quick anecdote.  I was in a meeting, and we had people with lived experience.  We had health system leaders.  We had scientists.  And we were all trying to decide what would be the next thing to focus on.

And there were differing opinions.  And, you know, we heard from our patient partners that they really wanted to -- us to study further spirituality and how that might -- impacts the receipt of mental healthcare.  And then we heard different things from the scientists and the health system leaders.  So, I think there's a lot for us to think about around whose voice we're prioritizing and whose priorities we're proceeding with.  And I think we still need to learn there.

JOEL SHERRILL: Thank you.  And Dr. Jemmott?

LORETTA JEMMOTT: Wow.  I think the lessons learned over the last 30 years of doing this kind of work is really critical that when I sat down to look at the process of what we did over the 30 years and how did we do this work, it was those eight Ts.  And so, I wouldn't take it any way.  I would always go back to it takes time to trust, build the trust.  You know, you got to build the trust.  You got to build the trust.  You got to take the time to do the work.  You got to have a -- you got to talk to people.  You got to be transparent.  You know, you got to really, really engage in a way that makes sense.  You got to stay at the table.  You got to be a little red engine that could.  You got to really do the things that matter.  You got to engage, and you got to have faith in the process.

Don't go away.  But I think that you want to give folks voice.  You want to give people the chance.  And so, if we don't do the work in the right way, nothing's really going to happen.  And so, I can tell you I'm tired.  I'm so tired of us doing scholarship that don't engage people in a way that makes sense. I'm tired of us doing the work that don't let people have voice.  I'm tired of looking at outcomes without saying that they really measured and got people involved in the process.  I am tired. And so, I am passing the baton and I want the next generation to really get it because we can't -- I like what you say, you can't study us without -- what did you say?

CARLOS LARRAURI: Nothing about us without us.

LORETTA JEMMOTT: Nothing about us without us.

And so, I think that we've really got to work really hard to think about what you heard today, how do you get people voice. And that, you know, people are sick and tired of us.  And so, they say, here you come again.  What do you want now?  They give us little gift card.  You all think we want this doggone gift card?  You should --

I talk -- you got to talk to them to hear what they say about us.

Man, it's horrible.  And that -- that's lessons learned.  You got to -- they -- man, shucks.  Do the work and listen to the voices because it takes a lot of work because they got their own thoughts about us.  So, we need to change their thoughts about us so that they want to work with us, and they have talent.  Get them on our team.  Listen to their voices.  Man, do the right thing.  That's what I'm saying.  Hope that's enough.


Talk to me.  That's a great point to end on our panel's words of wisdom and inspiration. Thank you for joining me.  And thanking our panelists for their inspiring talks and for this lively discussion.  We'll take a break now until 11:30 a.m.  And I'm supposed to remind everyone that there's no food or beverage inside the theater.

So, please make sure you consume all of your items in the lobby.  And I've also been asked to make one final announcement.  I believe we'd like all of the speakers, the NIMH Planning Committee, and the NIMH leadership to join us on stage for a photograph that we can take before we resume the next session.  Thank you, everyone.  Thank you, panelists.