Welcome and Keynote Address: NIMH 75th Anniversary Event 3

Transcript

FEMALE SPEAKER: Thank you for joining us for the National Institute of Mental Health's third and final 75th anniversary celebration, our symposium, Inspiration and Aspiration: Future Perspectives in Mental Health Research, here at the National Archives Building.

Today's seating is open, but we do ask if you could please fill the seats down front and in the center to make it easier for people who are arriving, possibly late. In case of emergency, please use the front. Please use the exits at the top of the stairs, near on either side of the theater, and proceed to the nearest marked building exit or follow NARA security and staff for further instruction.

Restrooms and a small cafe are located on this floor outside the theater and to your right. As a reminder, food and drinks are not permitted in the theater at any time. Once again, thank you for joining us today. Please take your seats. Our program will begin right now.

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MALE SPEAKER: 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 has 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.

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SHELLI AVENEVOLI: Good morning, everyone. Everyone hear me okay? So, I'm Shelli Avenevoli, the acting director -- not the deputy -- the acting director of the National Institute of Mental Health. I'd like to welcome you today to NIMH's final symposium in celebration of our 75th anniversary.

Thank you so much for being here today, and it's especially nice to see a pretty full room here in person and so many more of you joining us virtually online. I also want to recognize that we have two former NIMH directors with us today, Joshua Gordon and Richard Nakamura up hiding in the back.

As many of you know, NIMH is the lead U.S. federal agency for research on mental disorders and is one of the 27 institutes and centers that make up the National Institutes of Health, the nation's medical research agency. Our mission is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure.

Mental illnesses are complex, and they can affect people of all ages, genders, races, and ethnicities. Mental illnesses are the fifth leading cause of disability in the United States, accounting for almost 7 percent of all disability adjusted life years. NIH is committed to overcoming these challenges by supporting high quality research and providing hope to individuals and families impacted by mental illnesses.

The celebration of NIMH is 75th anniversary allows the reflection of historical accomplishments. Over the past 75 years, NIMH has evolved to expand her urgent needs of the nation, while continuing to advance basic, translational, and clinical research to improve our understanding of treatment of mental illnesses. Our progress advances and successes are shared by the Greater research community and the individuals and families impacted by mental illnesses.

It's really been a true pleasure to celebrate our 75th anniversary in several ways, including our three main symposia. The first one highlighted significant advances in mental research -- mental health research over the past 75 years. The second one focused on inclusion and mental health research, disparities in health, and access to care and mental health workforce diversity and brought together people living with mental illness with clinicians and community leaders.

During today's event, we focus on inspiration and aspiration, very appropriate. We will hear dynamic presentations by rising stars and trailblazers in the scientific community. Presenters will also share diverse perspectives and creative approaches to mental health challenges, including discussions about cutting edge advances that are shaping the future of mental health research.

Thank you especially to all of our speakers today for contributing to this final symposium, and for all attendees who are part of this historical event. So, before we begin our program today, we'd like to hear a few brief welcoming remarks from the NIH Director, Dr. Monica Bertagnolli.

MONICA BERTAGNOLLI: Hello, everyone. I'm Monica Bertagnolli. And I'm honored to serve as the director of the National Institutes of Health. Thank you for inviting me to provide introductory remarks at this important celebration. And I'm very sorry that I cannot be there to welcome you all in person. I'd like to thank Dr. Shelli Avenevoli for your introduction and for serving so capably as the acting director of the National Institute of Mental Health while a national search is underway for the next NIMH Director.

Thank you also to Dr. Joshua Gordon and all the former NIMH leaders who have helped the institute accomplish so much over the years in mental health research. Since I became NIH Director last fall, it has been inspiring to me to work with so many brilliant and deeply committed leaders across the NIH.

I'm incredibly grateful for the powerful team we have put together here throughout all of our institutes and centers to work toward our singular and noble purpose, to improve the health and wellbeing of all people.

Over the last 75 years, NIMH has supported basic and clinical research that has transformed our understanding and treatment of mental illnesses, paving the way for prevention, recovery, and cure.

NIMH research is more important now than ever, given the nation's mental health crisis as we emerge from the COVID-19 pandemic. With its focused mission, NIMH is well prepared to respond to the growing attention to mental health research across the federal government, in Congress and from the public at large.

I know that NIMH is committed to supporting high quality research and making innovative tools available to help us better understand mental illnesses in all of their forms. And I am certain NIMH will continue to make enormous, if currently unknowable, strides in the next 75 years.

Today's symposium entitled Inspiration And Aspiration: Future Perspectives in Mental Health Research will feature presenters with diverse perspectives and creative approaches to the mental health challenges that face us today. Research like this provides much needed hope for so many people.

I want to congratulate NIMH for the efforts you made this year to involve the nation in your yearlong anniversary celebration. With multiple public events and conferences and with resources such as podcasts and social media, you reminded all of us of your remarkable 75 years of discoveries and achievements. And you're inspiring and bringing hope to all of those who work to bring health and wellbeing to all people.

Thank you to all the speakers who are here today to help us celebrate this important milestone and for providing your forward-looking vision of how research can advance to meet the needs of those affected by mental illness. I know that today will be filled with fascinating presentations, and I send you all my very best wishes for an inspiring and engaging day.

SHELLI AVENEVOLI: Great. Thank you. And now it's my distinct pleasure to introduce our first keynote speaker, Dr. Chyrell Bellamy. Dr. Bellamy is a professor in the Department of Psychiatry Yale University School of Medicine, director of the Yale Program for Recovery and Community Health, and associate director of Diversity, Equity, Inclusion and Accessibility of the Yale Center for Clinical Investigation.

Her research and practice examine sociocultural experiences and pathways to wellness and recovery in the prevention and treatment of mental illness and addictions, peer support effectiveness, organization, and leadership transformation with a focus on anti-racism, cultural humility, and responsiveness, lived experience leadership and community-based participatory research and co-design methods.

Dr. Bellamy openly identifies as a person with lived, living experience of multiple marginalized and minoritized identities, including mental illness, trauma, and addictions. She uses this personal connection in her role as a service provider and academic researcher in the health and behavioral health fields. Please join me in welcoming Dr. Bellamy.

CHYRELL BELLAMY: Thank you so much for that lovely welcome. It truly is an honor to be here. And I also just want to thank my folks from Yale's Program For Recovery And Community Health, who came down to visit us. And they're right here in front. [unintelligible]

Thank you so much. Thank you. So, let's get started. So, my talk today is called embracing lived experience as the future of research. I want to start with a land acknowledgement. All land in the United States was once on native territory. It is our duty to acknowledge that many of the institutions where we work or conduct research are indeed on native land. So, it's important that we give thanks.

Land acknowledgements do not exist in the past tense or historical context. Colonialism is a current and ongoing process. We need to be mindful of our present participation.

The objectives of my talk today -- I will be doing acknowledgements throughout my talk today. I think it's so important that we recognize all that have gone before us, that have come before us. I know I'm going to forget people, but please know that I am acknowledging you now.

Also positioning, positioning is really important to me to really give a sense of where I come from and -- about my journey. I was tasked to talk about my creative process, and so I'll share a little bit about that. But because a big part of my creative process is the ability to use my -- and embrace my own lived and living experiences, I will spend the majority of my talk today talking about that. And hopefully to provide some useful tips that could be really helpful to you.

So, let's get grounded. There's a poem that was written by my friend and colleague, Imani Harrington. Imani is a playwright and an activist in San Francisco. And she and I co-wrote a book, plays, monologs called Positive/Negative: Women of Color and HIV/AIDS. I was actually working on my dissertation at the time when I joined her as one of the co-editors.

The poem goes, "We need you, our brothers, our sisters, our people. Help us reaffirm ourselves and loving ourselves. Hold us, we can't stand because souls of shoes have traveled on our backs for so long. We need you, our brothers, our sisters and our people."

To me, this this poem grounds me. I say it at everything I do. I say it so much that my team at Yale Perch often say, "Oh no, here we go and again with the poem." But the poem, to me, is really about, how can we make sure that we figure out how to help people reaffirm themselves and loving themselves.

And particularly for the people that we work with in is doing mental health research. But also, how can we help each other? Because we all need that affirmation.

So, acknowledgements. This woman right here as Dr. Carol Mowbray, who was my mentor at the University of Michigan. She was doing incredible work around mental health research and really looking at ways in which supported education could support people who had a sense of psychiatric illness as they transition back to post-secondary education.

And I actually went to the University of Michigan to do HIV research. But I needed a job, and someone said, you know, "Hey, Carol Mowbray is looking for someone that has experienced working in the inner city." And I had come from New Jersey, and done a lot of work in Newark, New Jersey. And she needed someone that was ready and willing to go to Detroit, Michigan. And I was like, "I'm ready. I'm there."

So, Carol Mowbray just really helped me affirm myself. And not only that, I was like, this program is about me. I was one of those students that struggle a lot, you know, when I was going through high school and post-secondary education. And so, for the first time, I felt this sense of being affirmed with research that I was taking part in. Carol Mowbray passed away when she was 57 years old, but she still has a place in my head, and I still go to her quite often.

The woman with the mole is my aunt, Halistine George. She was one of those people that was always reaffirming. Reaffirming about myself as a Black woman, reaffirming of myself as a Black queer woman. A woman that gave me the ability to stand tall, and no matter how I showed up. And Halestine also died at the age of 57.

I am 57 years old. And so, it means a lot for me to be able to stand here today and be alive and feel happy about being alive for the first time in many, many years. The woman down in the bottom, obviously, that's her when she was cute and 18. That's Dr. Alfrieda Daly. And Dr. Daly also passed away, but she died when she was 93. So, that gives me hope.

And Alfrieda was a person that I met at Rutgers when I was getting my masters in Social Work. And she overheard me advocating for myself. And she approached me, and she was like, "Hey, you did a good job advocating for yourself. Come work with me on this methadone HIV related project."

And from that day, Alfrieda stayed in my life. She came down to South Carolina with me often to visit my family. She went to fish fries and all sorts of events that my family held over the years. But she also was a person that said, "You should go to graduate school, and you should go to the University of Michigan."

And I was like, "University of Michigan, what is that?" And I thought they just did basketball. And, you know, never did I know that, you know, she was sending me to one of the number one universities in the world. And it was just really important for -- to have Alfrieda in my life. So, thank you to all of them, and to all of the women people, non-binary people who have lifted me and continue to lift me. Ashay.

So, where I come from? I come from South Carolina. I'm from a little town called Brooksville, Little River. It's all now known as North Myrtle Beach. And we are of the Gullah Geechee people. And this is our land. If you are familiar with the South Carolina, you're used to seeing the mosque growing on the trees. And that's the Gullah Geechee flag there.

And I mentioned that because that culture grounded me again in who I am as a Black woman. These are more pictures from the South Carolina area. Atlantic Beach is the beach in North Myrtle Beach that only Black people were allowed to be on that beach. Because Blacks were not allowed on the other beaches in Myrtle Beach to go to those beaches. So, still today, when I go home to visit my mom and my family in Myrtle Beach, I make sure that I touch the sand of Atlantic Beach. It's called the Black Pearl.

And then we journey up north, like many of our folks did, from the Myrtle Beach area up to Trenton, New Jersey. And Trenton, New Jersey is where I grew up, where I attended public schools. And again, where I gained the sense of myself by growing up in a predominantly Black area, had predominantly Black teachers. And it helped me see that there were other people like me that are achieving and achieving successfully. But as they say, Trenton makes the world takes. I'm sure you're used to seeing that on the train.

So, changing the discourse for many years, I was not out about my lived experience. But being a part of Carol Mowbray's work really gave me a sense of it's important that people step out and step into their own lived experience. That's me when I was five years old. And that's me with the hat on at the University of Michigan. That's me and high school, that senior year picture.

And I want to talk a little about this article in The Michigan Record. When that article came out, it came out because the University of Michigan was doing a film called Depression on College Campuses. And they asked me to be a part of the film to talk about my lived experience. This film was shown at the university -- at the Michigan theater in downtown Ann Arbor. And it was a wonderful success.

After the film, one of my colleagues came up to me and he said, "You know, I spoke to, you know, one of our professors. And he said, you know, our career is ruined." And I just kind of looked at him. And at first I was like, taken aback, but then I was like, "No. Actually, it's just starting." It's just starting, because I've received so many calls of people who are reaching out to talk about this. So many professors, so many students, so many community members who want to talk about their lived experience. So, to me, that is the start of my career.

I also realized that that person, the reason why he said that is because he also was a Black male. He came through academia at a time when we all were supposed to act a certain way in order to make it through the system. So, again, he was just giving me that sort of warning that I need to be able to learn how to walk light so that I don't tread in ways that I shouldn't.

But again, being myself, I stepped out and did what I was supposed to do in regards to lived experience. And the reason is based on this quote by Audre Lorde, which I'll read to you. "Survival is not an academic skill. It is learning how to stand alone, unpopular, and sometimes revolve. And how to make common cause with those others identify as outside the structures in order to define and seek a world in which we can all flourish.

It is learning how to take our differences and make them strengths. For the Master's tool will never dismantle the master's house. They may allow us temporarily to beat him at his own game, but they will never enable us to bring about genuine change. And this fact is only threatening to those who still define the master's house as their own source of support."

And why is any of this important? I threw this slide in here because I think it's important to acknowledge that so many Black and brown individuals are -- continue to die because of suicide. We have a photo of Dr. Candia-Bailey, who was a professor and passed away due to suicide. We have Kryst, who was Miss USA, who also died as a result of suicide.

And then we have two of my colleagues, one is Elias from Brazil, who visited us as a visiting scholar. Amazing energy. He was there. And then November, just only three months after he visited us, we found out that he died as a result of suicide as well. He was a brilliant nurse in academia.

And then we have my colleague from Yale's Program for Recovery and Community Health, Dr. Miraj Desai. Dr. Desai died last November 3rd, I believe. And he's done some amazing work. He had a K Award. He had just submitted a DP1, I believe, the day before he passed away.

So, it is important that we nourish each other in academia. It's important that we recognize and acknowledge that so many of us are going through things, and we may never talk about those things. But yet we continue to struggle and try to get that DP5 in and try to get that RO1 that check in on people, right? So, that's my message for this.

So, my creative process. Someone asked me -- you know about nerves? I tend to get nervous all the time when I'm giving these types of talks. 80 percent of time I vomit. I didn't vomit today, though. [laughs] And so, I have this technique called palms down. And basically, that means panic at the last moment. You know, it was hard with this one, because as soon as Dr. Gordon sent me the message, and was like, "We want you to present." I'm like, "Oh." It started coming right away, right?

But it's really important because if I don't, then I spend so much time and energy focusing on the what, instead of really just embracing and sort of embracing that it's okay for me to be proud. It's okay for me to take this in. And don't get so caught up in the words and the language of what it is that you're trying to do.

Learning from and embracing community and lived experience, mine, and others. It's those folks down here that I've worked with since I came to Yale's Program for Recovery And Community Health, Kimberly guy and Richard Youins. I talk to them practically every day of the week. And they inspire me. We go to I go to them often with any idea. They either shoot it down or, you know, they give me advice on how to improve things.

And I just think it's really important for me because that gives me a sense of purpose in this work. And that also goes with remembering my why. Why is it important that I do this work in the first place? That why might change depending on what it is that I'm doing that research. We'll talk a little bit about that later.

Daring me to dream is critical. So, I remember early in my career, people would say, "Oh, you can't study," only Black people. Because people will not allow you to do that. You have to have a comparison group to other, you know, to whites. But I kept asking why, like, why is that the case?

And so, my thing with this is, don't question the why -- or question the why. But the question should be, what does it take to make it happen? What do I need to do to convince you that this is the research that I want to do? And seeing it all as a creative journey, as Dr. Shelley Best would call it, it's a creative disruption, the work that we're doing.

Revolutions begin when people who are defined as problems achieve the power to redefine the problem, John McKnight. We each have the power. This is one of those quotes at Yale's Program for Recovery And Community Health that we use. I am privileged to now be the first director of Yale Perch, after my mentor, Larry Davidson, in 20 years.

I'm also proud to say that I am the second Black woman in the Department of Psychiatry in its history to receive full -- to become full professor. And again, it is those experiences that I think it's important that I say out loud, because there's so few people who have been able to even get in the pipeline.

So, consumer involvement, user involvement, lived experience involvement, has been an increase in priority across our federal landscape, at least since 2002. We've added, you know, peer support. We've added, you know, the involvement of consumers -- and that's the word that we used to use, or service users in all, you know, aspects of work.

In terms of research, we do it, but we don't do enough. Like there's -- while there's a continuum of ways to involve people with lived experience. It's usually just to help with recruitment, or just to have your, you know, quarterly advisory groups, because that's what you told NIH that you were going to do.

Key to involvement is community based, participatory research, which I'm sure all of you know about. But I really want to focus on two aspects of this because it's really about bringing the community together so that they are assisting throughout all aspects of the research. From conceptualization and that is generating the ideas to data collection, to design, to analysis.

And people often say, "Well, how can they do analysis? They don't know statistics or they don't know qualitative methods." Then teach them, right? Teach people how to do those things. And there's so many ways that we can involve people, particularly as well in terms of dissemination. Co-learning is very key to that process. And co-learning means a strengths-based approach that acknowledges privilege and power. And again, those are hallmarks of CBPR.

I'm now going to go through a few slides. And I'm going to go through them rather quickly, because I'm just pointing out, again, some of the history around the involvement of sort of patients, clients, state talk, stakeholders. Today, we're using more of the terms lived and living experience experts and involvement and research. This goes back to the 1980s.

I actually was part of that process, as I mentioned, having done work in the area of HIV/AIDS. We were doing a lot of that work back then. I fear to say I was one of those gatekeepers when researchers would come to me, when I was the assistant director at the New Jersey Women and Aids Network to try to get research projects going. I would give them like a thousand questions of, why are you doing this? Why do you want to meet with our people?

So, we have Rose Kushner, who did some freelance writing and talked about breast cancer and surviving breast cancer. Lots of work around activism, again, AIDS and ACT UP, and groups like that. Maternal health, again, more work was done in that area. And the United Kingdom and Canada, I can say arguably, that they have one of the best systems of really engaging patient provider involvement throughout all aspects of their work. And it's more of a mandate.

Over the years, PCORI has been instrumental in making sure that the target population is also key to that research and hired as partners in the research. And I'm thrilled, thrilled, thrilled, as a late to see that NIH across the board, I've seen RFAs that are asking for more lived and living experience involvement in projects.

So, why lived experience research? And I want to start with this first one. Rather than presume or guess, just ask the author. And actually, that's a phrase that Kimberly Guy uses all the time, which is, if you want to know about the book, ask the author, you know. Don't just -- you know, go to the people that have the information. It gives us a connection with that human experience. And that's so key when we're talking about the future for research.

Because as we focus on future research, we're bringing in all sorts of mechanisms like AI. So, we have to make sure that we continue to make that connection with the human experience. It also gives us rich stories that go well beyond the data, particularly if you're coming at this from a quantitative perspective. And it reminds us that illnesses happen to people.

Another aspect of this is that it helps us in terms of bridging different communities. I love when I'm doing research projects, and I have the doctors in the room and the RAs in the room, and also, you know, people with lived experience. All coming from different walks of life to come together, to really figure out and solve a problem together and bring all of their resources and all their experiences. It just asks for a more rich learning environment.

It also allows us to address discrimination and other issues that sometimes are like, you know, we tend to hide in these situations. But working with people with lived experience, they have a way of bringing the issues right out and calling us on things that we need to be called out on.

Otherwise, include can we move away from just this illness model and really include, you know, things around the social determinants of health and other ways that people are, you know, living in these environments.

The other thing here I have is more honest responses from participants, and this is really key. I know that when we were doing a research project, we have all of our lived experience researchers examine our measures. And sometimes when they're examining them, they're like, "This doesn't even make sense. Like, this question doesn't make sense." And I'm like, "Well, you've been to lots of studies. So, you've probably heard that study -- I mean, that question a thousand times. And they're like, "And I probably didn't answer it right a thousand times."

And I think that's really important to know. It's really important -- I know that we have these standardized instruments, but we also need to make sure that they are standardized based on what human beings are telling us makes sense to them. Otherwise, we're collecting data on questions that people may not even understand what you're asking them.

And particularly, we tend to get these satisfaction surveys. I mean, I don't know -- and I can tell you, primarily in our state, in Connecticut, satisfaction surveys are like, really, really high. Most people are saying they're, like, totally satisfied with everything. But then if you go talk to them, they always have some complaints about this, that and the other. So, how can we learn to collect richer data? More wise, better recruitment, getting the people that you need.

I have a project right now. It was originally funded through the NIH Common Fund, and it's called the Imani Opioid Faith- based Breakthrough Project. And the thing I love about this project, in terms of recruitment, is that we have to go where people are. And when I say we have to go where people are, we do these deep dive recruitment efforts, where we're going in alleys, where we're going in places where no one else will go to have conversations with people about the projects that we're working on.

And I think this is really essential that if we want to really reach the people, we can't keep calling them the hard to reach population. Hard to reach to who? Only to us. The people in the community know how to reach these people. And here are just a few examples of those type of articles that we been able to publish as a result of some of this great work.

And as I mentioned, Kim is saying, if you want to know about the book, ask the author. We actually use that as our title for this for this paper. This paper was again led by Dr. Desai. Again, we miss you, Dr Desai. Another paper was led by another young researcher, Ana Florence, with a whole bunch of us.

Here's the thing about lived experience research and doing sort of co-production and co-design work, it's so important to also acknowledge all of the people who have been involved in those research projects. We acknowledge people with lived experience. We acknowledge Ras. Everyone needs to be acknowledged for all the work that they're doing.

And so, a host of us are on this paper. During covid, we wrote this paper because many of the people talked about, you know, they were being approached because they have lived experience. Like, how -- you know you're surviving this better than most of us and can you tell us how you're doing that. So, we had a series of conversations, and we wrote this when reality breaks from us, lived experience wisdom in the covid era.

Another one is by colleagues, Louise Byrne, Larry Davidson, and others. Louise is from Australia, to disclose or not to disclose. Again, talking about the central aspects of lived experience. Because disclosure, you know, I can stand here proudly and talk about my lived experience, but I will say that it's a journey. It's a constant journey of coming out about your various different lived experience, and it's not easy. And this paper actually points to some of those factors. Again, all driven by lived experience and actually by lived experience researchers.

Another paper, which I just love the title That was a State of Depression by Itself Dealing With Society: Atmospheric Racism, Mental Health, and the Black And African American Faith Community. Dr. Desai and us, we worked with churches to get a sense of how do you even define those experiences that you have. They were not using the term depression, they were not using the term, you know, bipolar or schizophrenia. They were using other terms. So, how, if we're trying to work with particularly the Black community, how can we define what it is that they're calling those experiences.

And another paper that we work -- we wrote, and I have Dr. Jonathan Edwards right here in the front, and this is a paper on surviving race with allies, disability, race, ethnicity, and human rights. And actually, this is for a chapter. We lost Celia Brown, who was an activist, just recently.

So, I want to quickly walk you through an example of this process. Everything that we do, we do it from a place of starting with the why. I don't know if you know Simon Sinek's TED talk on starting with the why. But basically, Simon talks about it's really important to focus on the why. Because when you focus on the why, then you focus on the passion. What draws people into this work in the in the first place?

And when you're working with community and researchers and lived experience and RAs and, you know, a variety of different people, while people are excited to come together, they will also get very bogged down in the work. Particularly when there are conflicts. There might be conflicts coming from the lived experience side of things and say, "You know, I realize that you've been doing this for the last 20 years. But we're telling you that you should probably think about doing it a little differently."

And then, you know, so there are arguments on both sides. So, how can we do that and hold on to that why. By holding on to the why in your own passion, that's how you're able to hold on to the work.

And so, here's a why that was central to a NIMH grant. We have an R34 which we called Harambe, which are folks down there name. And it means, let's pull together in Swahili. And it was really a project that focused on, how can we, you know, really look at the fact that people with mental illness are dying 25 years earlier than the rest of the population.

Every time I say that, though it feels criminal to say it and not do anything about it, right? So, but how can we do something about it? And that is the thing that drove us that were in that particular study. That was our why. How can we make sure that this doesn't happen? That was our collective why.

So, in order for that to happen. What do we need? So, the how engaging all of us is key. And when I say all of us, we all have stories or barriers and facilitators to healthcare. We were hearing from the doctors talking about their barriers and facilitators to healthcare when they go in as patients. It was awesome for the people with lived experience to hear them also talk about their experiences.

Because they thought for some reason that they had a gold card, that when they walked into the medical facilities, that for some reason they got treated differently. But it doesn't work that way. We also got to hear from RAs right, research assistants. Oftentimes, research assistants are like at the bottom of the wrong and often are not counted on or talked to about their ideas. But in this project and this work, we want to make sure everyone was included and that their voices were being heard. And I think that's central to making sure that you get great results.

Inclusion, partnership, and transparency. What's really key for all the work that we do is entering and exiting communities respectfully. I don't care whether that is the local mental health system. I don't care if it's someone's home, someone's neighborhood, that we are only there as visitors, and then we will be leaving.

So, that space doesn't belong to us. And just like you know, I guess, because I'm a Southerner, and when you walk into any southerners -- particularly a Black southerners house, the first thing that you do is acknowledge the elders in the house and make sure that you say hello, right? And I've been in so many of these centers where you can walk through them and you can walk out and never have had anyone not say hello to you at all. Right?

So, it's really important that we acknowledge that people work in those communities, that that's their lives, people work in those agencies. And key to that is relationship building. One way to start building relationship is to acknowledge the people who are there.

Transparency. Can we be -- can we really be honest with each other, and are we willing to learn from each other? We know that that's not going to happen in day one. I mean, trust is the automatic -- you know, lack of trust is an automatic, you know, default for many of us. Particularly if you've had any, you know, experiences of trauma or you know, we know that it takes a long time to build up that sense of trust.

But ways that you can do that, one is again, talking about positionality. Talking about who are you and why are you here? Asking appreciative questions. Turning things around and asking questions of what works. Don't get so bogged down in the problems. Because we get bogged down in the problems, we're never going to solve anything.

And breaking it down, translating discussions on research and in a language that we can all understand. I tell my entire team that if Chyrell's mother doesn't understand, then forget about it, right? And I think it's so key. And I say that because when I call my mother and I talk to her about research, and she's not able to understand, I need to talk to her in a language that she's able to understand what I'm trying to say.

And I don't think -- I think we all need to do that. What's the purpose of writing these, you know, articles and, you know, doing this work, if your everyday person doesn't have access to it and can't understand the language that you're trying to, you know, impart.

Fostering understanding and mutuality. It has to come with the willingness to keep the discussions going, even when they're tough. And they will be tough, there will be times when they will be tough. I think about that even from the -- I'll talk about from my experience. You know, it's humbling when a person with lived experience, or a person in community questions you and your direction.

It doesn't mean that I, you know, don't show up with all of the knowledge and all of the experience that I have as a person with a PhD and all of my research accolades. I show up with all of that. But I also have to be able to have those discussions with, you know, people from all different sides. So that we all can come to an understanding about what it is that we're trying to talk about.

A willingness to listen, revise and adapt, right? So, often we get caught up and you know those check boxes? Oh, you know, you have your checklist. I did this today. I did that, I did this. But sometimes you go checking too fast, right? And one thing I will say about doing participatory work in any form is that it will take more time than anything else. And if you don't make the time, then you're not doing it properly. I already mentioned entering and exiting and the willingness to partner is just key, and validation of each other's roles in this work is also key.

So, opportunities to take action. Here, I just have a few of -- discovery, dreams, design, and destiny are terms from Cooperrider's appreciative inquiry. And really those questions of, what gives life? You know, what is giving your -- you life, but also, what is giving life to this research. What might be envisioning results? What should be the idea like, how can we co construct this together? And how to empower, learn, adjust, and improvise?

Again, constant throughout the process, right, being flexible. I know you wrote in there and your, you know, specific aims that you're going to follow this, that, and in the other. But also, be flexible, so that you can learn and grow and revise and adapt along the way.

And then I just want to end with these questions. What are you currently doing in your community to enhance inclusion? What more might be done to build community? What might we do collectively to advance community? If we stay focused on the why, we all get something from the partnership. In that particular study around Harambe, we all learned about what was happening in terms of health choice and health outcomes for individuals with mental illness.

We improve health outcomes for those individuals. We improve services based on what it is that they're asking for, rather than just going about in our own way. And we have informed research that is coming from person centered perspectives.

Participatory approaches and the need for leadership. Today, again, the language that we are using is called co-production and co-design, leadership and also knowledge equity. And this is so key to how we think about and do this work.

At the Yale Program for Recovery, we started a consumer research and evaluation network probably over 20 years ago. We called it CREN. And CREN was really about bringing people together so that when a researcher had questions, they could call up a CREN. And then a CREN would be able to provide them resources that they need, particularly lived experience Resources.

Today, I'm proud to say that we're moving toward what we're calling the lived experience experts as partners, LEAP initiative. And that, again, is bringing in more people who can focus on lived experience research. I also just want to acknowledge that I'm certainly not the only person that has done this work. We have lots of people who are doing great work in this area.

I have colleagues such as Nev Jones, Laysha Ostrow with Live & Learn. And I mentioned Peggy Swarbrick, all lived experience researchers like myself who make sure that this is key to the work that They're practicing.

In closing, in embracing the future of research and involving lived experience -- lived and living experience. And I keep saying lived and living experience, because right now, we are -- it's so key that we make sure that we're talking not only about the people who have lived it, but the people who are currently living it.

Those people may not even use some of the language that we're talking about around recovery, around harm reduction. They may still be struggling and in and out of hospital or in and out of using drugs or choosing to continue to live the lives that they live. We have to make sure that we hear from both people with lived and living experiences and invite them in the partnership. It can't be just the people who we think are, well enough, you know, to be at the table.

In terms of research in this area, we do need more research in this area, there's a lack of systematic evaluation regarding how lived experience expert partnerships translate into improved health outcomes and reduced disparities. So, we need more research in this area. Existing frameworks often fall short of providing clear operational guidance for involving LEEs in meaningful, non-tokenistic ways.

How can we make sure that they're involved throughout in the variety of different roles? Key questions include, how does partnering with LEE happen so that people across all levels or skills or expertise feel valued. It's that subjective feeling of feeling valued and being a part of the process.

How do invest investigators incorporate these values in their research? And how do we know the authentic engagement of LEE in research is happening across different contexts, different cultures and populations/ As we have learned over the 25 years of doing this type of work involving LEEs again.

I'll just say it again involves commitment. It involves time, resources, humility, sensitivity, a genuine desire to learn from one another. And most important, the ability to develop authentic relationships that build on mutual trust and respect. If we all had that, I think we could all go home at the end of the day and really feel like you could take a good nap, right?

And actually, I will say that actually -- when they were asking me again, like, what is your creative process? That is my creative process. Because it starts off in the morning, talking to people that I love, that I love working with about research, about what's up for today. And then ending it and knowing that we've done our best for the day.

Those relationships are not just part of the process. They are the process, right? They are the process. It's so important that we make it a part of the process. And of course, make sure people get paid too, right? And in closing, the future, research needs to develop rigorous, psychometrically valid measures that can capture the multi-dimensional nature of lived experience, expert partnerships. And again, that's cross diverse populations, diverse research contexts, and ensure that it's authentic and inclusive.

And I just want to end here so I can open up questions. But these are two of our projects and two of our amazing research teams. First is the Imani U01 that I have with Dr. Ayanna Jordan out of MIU. And these are folks here in Connecticut, and they're just beautiful faces. And the folks here, I actually have a Brazil Peer Implementation R34 grant where we are trying to implement peer support in the city of Campinas.

And these amazing folks have been meeting for the last year to learn about research, to learn all about peer support. They've adapted a peer support intervention and made it their own. They showed up. You know, obviously there were language challenges. I got a chance to visit them in May with Dr. Mark Costa over there. And it was just a tremendous experience to also just hear from them about how much they felt valued as being a part of the research team with Dr. Rosano Maco Campos [phonetic] over there. So, again, you can see this big smile on my face, because, you know, they just bring so much joy to my life.

And in closing, you belong. For belonging to be real, people need the recognition of others. A message given in word, deeds and attitudes that says you do belong. You are a valuable member of this community, and we need you. Thank you.

I'm not sure if we have time for questions, but I wanted to make sure that when we did end, because I know we're doing a lot of transition, and that presentations are back to back. That people had time to talk, but questions?

MALE SPEAKER: Yes, hi. So, thank you very much. That was really fantastic and inspiring. I wanted to really make just two comments. I think a lot of attendees are probably not aware. So, I'm in the peer review branch at NIMH. So, we review a lot of the applications that come in that are sort of a specialized initiatives, and RFAs and whatnot.

And I think the point I wanted to make, which I think really follows up on what you're saying, is that, first of all, we've seen a very large increase in the number of applications that include community based, participatory research. And so, I think that's inspiring, and it certainly is consistent with the level of importance it takes.

The other point I thought would be worth making is that, you know, our study sections, which include -- they focus on effectiveness of mental health interventions and also mental health services research. Again, something many of you may not know is they have built into them what are called public reviewers. And these are individuals with their people with lived experiences. They often have worked or do still work in community health clinics, at foundations, at advocacy groups.

And they are -- like we have standing members of these panels that are such individuals. And it's very clear that they bring a profoundly valuable real world perspective. That I think the scientists understand a lot of these issues, but they sometimes get a little bit bogged down in the design of the studies and whatnot and lose track of the practical realities.

And so, I guess my point is, NIMH, I think is definitely making efforts both that are inspiring applications, and then also in how we evaluate them. Thanks.

CHYRELL BELLAMY: For sure, for sure. And I haven't served on the standing review for NIMH serve for two years. Shout out to Eileen Schultz [phonetics], who was just an amazing person. I just want to say that, you know, I love it when those folks are in the room. Because they always offer, you know, just get right down to the, you know, the plainness of it all and just pose these like, great questions that we all can think about. So, yeah, I love that you do that. Keep doing that. That's awesome. Yes?

FEMALE SPEAKER: It's very inspiring. I'm a researcher from [inaudible] program. [inaudible] I've been trying to involve lived in and folks with living experience, but it's been difficult. One, because, you know, you have to know how to include them and build capacity before you get [inaudible]. Otherwise, that's the [inaudible]negative consequences.

Plus, also this kind of approach that they don't know something. Whereas I've tried to build capacity within our team, to engage them in appropriate ways first, and build capacity and try to get them to the people. Any suggestions for building capacity [inaudible].

CHYRELL BELLAMY: First of all, give us a call. [laughs] And you can talk to some of our folks down here. I think that -- I don't think we should over sort of inflate what capacity means, and just really think about inviting people to the table, right, first. To have conversations about the research itself, about what it is that you're doing. And maybe focus on -- even if you have to do that several times, like three or four times, until everyone has a good sense of what it is that you're trying to study here.

And I will say that that's not just important for people with lived experience, though. That's important for the RAs on the team. That's important for other people on the team too. Because, you know, the PIs, you know, you write the grants and you have, you know, you know it in and out. But most people at the table actually don't know it in and out.

So, I think we all need to slow down and break it down so that we can explain it to everyone. Now, in terms of building capacity, there are so many things that you can do like for us, like take qualitative interviews. Like, if we wanted folks involved in qualitative interviews, we first might start off by shadowing right? So, having them shadow me while I'm doing a qualitative interview, have them in a room where we're doing like qualitative analysis.

But again, giving them some of that same training that you would give any new researcher, you know, postgraduate student who's coming to work with you and having and taking the time to do that. Because one of the things you mentioned about like that, you don't want to further like sort of increase, you know, disparities, right? Or make people feel sort of, sort of less than because they don't know certain information.

Larry Davidson used to have his daughter when she was young. She's now that -- she now done the intern with me over the last two summers. But when she was, like 10 years old, she made signs for us. And basically, it was like stop signs that said, break it down. So, in our staff meeting, if someone said something, you can hold up the sign to say, "We don't understand what you're saying."

And I think again, that was important, because in our staff meetings, we have people come from all over the world. And they have -- they're talking about a variety of different science related topics. And I study social science, so I may not know exactly what they're saying, sort of in the neuroscience area. But often, we just sit there and we're like staring, and we don't even know what the heck people are saying, right?

So, again, breaking it down allows everyone to say, "Let's step back a bit so that we all can make sense of this material together." And I think that that is heartwarming for other people, that it's not just the people with lived experience that need this information and need to have it broken down, but it's all of us, in some ways.

MALE SPEAKER: A great presentation. Congratulations. I've had this burning questions that I've been at Perch. And I'm glad I'm in the house so that I really present it and say it. And try to get some really solid understanding of exactly what's going on here. I mean, research, I think, is needed. It is designed to make our lives better.

But what I'm considering, I've always thought about is sustainability. So, you know, we have gotten people to participate in the research. We've gotten people that we've seen their lives really blooming and get better. And so, knowing that this is funding by, you know, you guys here. And I don't see why other government agencies that you're not coinciding that with the research and research information to sustain it within communities, if it's really, truly working.

I mean, what good is research? What good is discovering it's something that [unintelligible] somebody life if it's only for two years or four years? I mean, I'm not the sharpest knife in the drawer, but damn. [laughter]

So, that's always been my issue with a lot of grants that we've done. And I've witnessed this. I've seen people get clean. I've seen people lives change and get their kids and they're growing and their kids are in school. And I've seen folks really get it back together, you know, and get on their medications, and come back out in the community.

And at Perch, we got so many things going. We got a bigger group. We got, I mean, there's so many things that people connect with and feel up into being a part of, you know. So, it's -- but it's two years, and after two or four years, or three years it's done. And it's like, you know what it reminds me of? And my surgeon, this guy who did my hand, told me, he said my hand is so bad. It's like a house that's burned down.

But after you come in our community, you do your research, you get our information, and then we you give us a little, small stipend, and then you leave, and it's like a burnt house with the train still up.

CHYRELL BELLAMY: Thank you. Yes, sustainability is key. I'm not sure. Maybe someone from NIMH can speak to whether or not you -- you're now putting in a sustainability statement. I know that when I was talking recently, actually last week, to a PO from NIDA [phonetic], she mentioned the acronym SPECS. And one of the S's stands for sustainability.

And so, now you have to complete a form stating how you actually will sustain this work that you are proposing. And so, I -- that was new for me, hearing about this particular form. I think that's a wonderful idea. I think it's a wonderful idea because, you know, I get the pleasure of working with this young man, Richard. And, you know, and if it wasn't -- if I didn't have him in my ear of how can this be sustained, I probably would just say, "Okay. Here's my -- I did my analysis. I published my paper. Now it's time for me to write the next research grant, right?"

But instead, you know, Richard and the other people on the team will say to me, "Nope. Let's figure out how to then take this information and take it to the community. So, after you know Harambe, we then approach the city, -- the state of Connecticut. And we were able to do three Harambe groups at local mental health in Bridgeport and Middletown, as well as in New Haven. So, they were able to see what does this look like with just people doing it in the community. And that was a great opportunity.

Again, it's important that we continue to try to focus on how can we sustain this work? Because if we don't, then we run -- we are truly doing the disservice for our community. And we might, in a sense, be further increasing some of those disparities. Because people get to a point where they get start trusting in you. They see some improvements in their health. And then you kind of pull away, because the research is over, right?

So, we got to make sure that once we get this research done, that you know, we're doing some translational activities. And then making sure that, you know, our agencies, our mental health agencies, our substance use agencies, our communities are really embracing the work. And then, you know, using our findings to do these programs. So, thank you, and thank you very much. One more question. Sorry.

FEMALE SPEAKER: Morning. Thank you for your talk. Cognizant of the time, this actually relates to what the gentleman before me said. So, we have some research that is traditional and it takes from the community. We have some that's transactional. If you give to me, I'll give you something I determine. Yours is more participatory, is more collaborative and relational, which I appreciate. But I'm curious, what did the individuals that you're with, that you're co-producing with, ask of you when you came to them?

CHYRELL BELLAMY: Wow. For me, individuals are asking for the honesty and transparency from the beginning, right? So, they want to know exactly how this works. And I say that because recently I was involved -- I do this in various different projects. And several of us are in another project that I'm not the PI on.

And I noticed that, you know, we were in a separate meeting than the research team. And I said, "Why are we separated?" And they said, "Oh, it just makes it easier, because we don't want to bore you." I said, "Who says they're going to be bored?" Like you just made an assumption that other people are going to be -- because they have lived experience, that they're going to be bored. I said, "Actually, I bet the people that you're talking to, are probably bored. You know."

But I mean, I say that because I think it's important that they're included in all aspects of the research, right? So, that they understand it, that they trust, that I'm not just using them. One of the things that they often want to make sure is, what do they get from it, you know? And often, that involves for them, they want to make sure that they got trained.

They loved all of the training from human subjects to HIPAA to learning about the different measures, to qualitative analysis, quantitative, you know, all of the different aspects. And also learning about health disparities in our communities, right? So, this is something that we all study. We know what the health disparities are in Black and brown communities. But when you are a person that has lived experience and you're just you might be just hearing it for the first time, it's also giving up my time to be able to talk to someone, even after the meetings, to say, "Chyrell, you mentioned this. Is that for real? Black people really are dealing with that?"

And just being really able to have those conversations that they may not be able to do in the room from the beginning, right? You know that also takes time, right? So, yeah, thank you. That's a great question. I really appreciate that. And thank you all so much.