Turning Stigma Into Stories of Hope with Aderonke Pederson, MD

Journal of Clinical Psychiatry

Publisher of peer-reviewed research discussed in this episode.

Dr. Aderonke Pederson – LinkedIn

https://www.linkedin.com/in/aderonke-bamgbose-pederson-85345315/

Dr. Aderonke Pederson is an assistant professor of psychiatry at Harvard Medical School and a psychiatrist in the Depression Clinical and Research Program at Massachusetts General Hospital. She trained at Northwestern, completing a Global Health Clinical Scholar certificate and serving as chief resident before joining Harvard in 2021. She is Director of Equity for the MGH Clinical Trials Network and Vice Chair of the Institutional Review Board for Mass General Brigham, with research funded by a K23 Development Award.

Ben Everett, PhD, is the creator and host of The JCP Podcast, a series that brings together leading voices in psychiatry to explore the latest research and its clinical implications. Everett earned his PhD in Biochemistry with an emphasis in Neuroscience from the University of Tennessee Health Science Center. Over a two-decade career spanning academia, publishing, and the pharmaceutical industry, he has helped launch more than a dozen new treatments across psychiatry, neurology, and cardiometabolic medicine. His current work focuses on translating complex scientific advances into accessible, evidence-based insights that inform clinical practice and foster meaningful dialogue among mental health professionals.

This transcript has been auto-generated and may contain errors. Please refer to the original audio recording for full accuracy.

00:00 – Introduction: When Story Becomes Clinical Intervention

Dr. Ben Everett: Hello, and welcome to the JCP podcast. I’m your host, Dr. Ben Everett. In each episode, we sit down with leading clinicians, researchers, and educ– and e– and educators to explore the science-shaping mental health care today with a focus on the insights that matter most to you in clinical practice. Today’s conversation is about something that sits in an unusual intersection in our field. The idea that a story, someone else’s lived experience, told well and shared at the right moment, can function as a clinical intervention. Not simply a soft adjunct to treatment, but as an intervention grounded in sound theory and supported by a growing body of evidence. Mental illness stigma and medical mistrust are more than unfortunate attitudes. They are measurable barriers that keep many people, particularly Black adults in the United States, from seeking mental health care, even when they meet the criteria for moderate to severe depression or anxiety. My guest has spent her career asking an important question: Can structured contact-based storytelling help close that gap? And if so, what does it take to develop that approach into something rigorous enough to evaluate in a clinical trial? Today, I’m joined by Dr. Ronka Peterson Today I’m joined by Ronka Pedersen, who will help us explore how healing st- who will help us explore how healing stories can become therapeutic interventions, reducing stigma, addressing medical mistrust, and ultimately improving symptoms and engagement care. Dr. Pedersen is an assistant professor in psychiatry at Harvard Medical School and a psychiatry– and a psychiatrist in the Depression Clinical and Research Program at Mass General. She trained at Northwestern, where she also completed a go- a Global Health Clinical Scholar certificate and served as chief resident before joining Harvard and Mass General in twenty twenty-one. She is the Director of Equity for the MGH – Clinical Trials Network and Vice Chair of the Institutional Review Board for Mass General Brigham. Her research, funded by a K twenty-three Development Award, along with MGH’s Claflin Distinguished Scholar and Physician-Scientist Development Awards, has focused on understanding and dismantling the psychosocial barriers, stigma, mistrust, religiosity, and racial identity that keep Black adults from engaging with mental health services. Her current clinical trial is testing a self-administered, video-based mobile intervention built exactly on this premise, that hearing from someone who shares your background and has lived through what you’re facing can change whether you walk through the door for care and improve your mental health care outcomes. With that, Dr. Pedersen, welcome to the JCP Podcast

Dr. Aderonke Pederson: Thank you so much for having me, um, on the podcast, and I’m looking forward to talking about psychosocial factors, um, related to stigma, mistrust, and certainly, uh, for things like religiosity. They’re both protective and also depending on, um, how we might engage with some of these factors, they could serve also as barriers. And it’s also important, you know, that we always distinguish when we have some of these conversations, the difference between racism and race, that race is not a barrier in and of itself, but racism is the, the psychosocial barrier, uh, to its, uh, equity and, um, and engagement in mental health services

Dr. Ben Everett: Yeah, that sounds wonderful. I- I’m really looking forward to getting into that today. Um, I want to start by establishing why this matters clinically because, you know, I, I’ve read about and, and written about stigma and mistrust. They’re still sometimes treated as soft peripheral issues rather than direct drivers of morbidity and mortality.

03:30 – Stigma as a Fundamental Cause of Health Inequities

Dr. Ben Everett: You’ve described mental illness stigma as a fundamental cause of health inequities, not just an unfort- un- not just an unfortunate byproduct of the illness, but a structured force in its own right. Can you walk us through what framing that clinically means and, and why it matters why we think of, of stigma the way, you know, w- w- you’re describing it rather than just a, an attitudinal problem?

Dr. Aderonke Pederson: I think it’s so important to start exactly where you’ve asked the first question, which is, you know, what is stigma and why do we care? And what is mistrust and why do we care? And are these factors, some ways, universal, uh, barriers and problems? Yes is the answer to, you know, that, uh, sort of rhetorical question. Stigma has been described as a fundamental cause of health inequities, and what that essentially means when you, when you take away of the other barriers to engagement in care, help seeking, uh, engagement with your doctor when you’re prescribed a medication or prescribed therapy, when you take away access issues, when you take away financial problems and barriers and cost. This fundamental issue of stigma remains a barrier to closing those gaps in terms of optimal healthcare and optimal wellness and wellbeing. It’s considered a fundamental cause because no matter how many other public health issues you address around it, if stigma remains, it will remain a key factor that prevents people from getting into care, engaging with that care, and having positive outcomes like w- like is always our goal when we’re talking about public health initiatives. Mistrust is a little bit different, and I know we’ll talk, you know, in some detail about the distinction between, you know, when we’re talking about stigma and when we’re talking about mistrust. Mistrust is something that, um, that arises as a barrier, but not because it is not expected. We expect mistrust if we have historical factors that have led to that mistrust. So whether we’re talking about, uh, specifically in, in among Black people in the United States, that there are historical factors like experimentation on Black individuals, uh, without consent and in inhumane ways that have led communities to have a certain amount of caution, which is expected and very human, a very human reaction to say, “This is… These are the stories I’ve heard that have been passed down. These are the stories I’ve seen in textbooks,” the Tuskegee experiment, the use of HeLa cells through Henrietta, Henrietta Lacks without her consent, uh, a- and, you know, things like people being told that their skin is thicker, and therefore, uh, they can experience pain at higher thresholds within our health systems. And that actually is modern day still because studies have been done in the last 10 years that reinforce these notions. Mistrust in some communities is born out of very valid factors and a backdrop, drop that is understandable. We, we tend to talk about mistrust a little bit differently, which is that we first have to validate and address mistrust before we talk about reducing or eliminating it because the factors that led to that mistrust need to be directly addressed

Dr. Ben Everett: Yeah. I, I really appreciate you very carefully going through, um, the distinction between those two terms.

07:30 – From Basic Science to Psychosocial Mechanism: Where Stigma Intervenes

Dr. Ben Everett: When we’re thinking about stigma and we’re thinking about medical mistrust, do, does having this, this groundwork for the, the distinct difference in those two issues, does it change how you think about intervening to address those, those issues? Or do you think the intervention, um, can maybe get to both of them simultaneously? Mechanistically, you know, they can be a little different, but does that really change how you think about intervening?

Dr. Aderonke Pederson: Absolutely. I think one of the beauties of science and scientific inquiry, uh, that is true in the basic sciences where you look at, um, y- you know, when you’re thinking about, um, the model of a reaction, and you’re thinking about what, um, proteins might be involved in that reaction, uh, how the DNA and RNA, um, are configured into a particular outcome. You’re thinking very mechanistically, uh, fro- from point A to point B, how do we get this, you know, illness or disease process, and where do you intervene with a drug? And I think that’s very much the same when you’re thinking about, um, when you’re thinking about psychosocial issues, that we’re not just coming in, you know, sort of, uh, with a, a fire hose and saying, “We’re just gonna help with everything.” But we’re trying to understand, again, very similar to what we do in the basic sciences, we’re trying to understand the mechanism behind what is the root cause of this issue. How does it play out in the clinical experience of a patient when a patient comes in and they start to have initial symptoms of depression or initial symptoms, um, of anxiety, or they start to manifest prodromes when it comes to psychosis or psychotic disorders. In those first interactions, there are specific things that are happening and in specific places that we can intervene to change long-term outcomes and to reduce that time between onset of symptoms and engagement in services, to reduce the time between onset of symptoms and your first intervention, whatever that might be, psychotherapy, pharmacology, digital therapeutics, as, you know, we’re seeing emerge more and more. so where stigma comes in is a very easy way to sort of understand the very immediate role of stigma is that it lengthens the time between onset of symptoms and engagement in services so that illnesses and diseases that we’re dealing with in the mental health sphere, um, are harder to manage and harder to treat when there’s a long time between the onset of symptoms and the, and the intervention in terms of whether it’s psychotherapy, pharmacology, interventions, or even, uh, modalities like ECT or ketamine. Whatever modality we’re talking about, that time gap is a very critical one, and it’s also critical, you know, at the level of the brain, like just thinking about the macro structure of the brain because we see when people have untreated depression for long periods of time, we are able to see actual brain volume loss. We see hippocampal volume loss. Once the, the train has left the station, you can’t recover some of those things, and in psychosis, that’s very much the case. Untreated, um, psychotic illnesses lead to, you know, macro level changes in the brain. We have the neurotransmitter level changes, but also those macro level changes that we can see. stigma then bec– if, if it lengthens that time, becomes just as critical as the intervention that you’re trying to get the patient to, whether that’s psychotherapy, pharmacology, um, or any other kind of modality like we’ve talked about. It becomes as critical, if not more critical, you know, at the onset of those symptoms and that time span between onset of symptoms and, um, and the intervention that you think would be recommended for, for your patient.

Dr. Ben Everett: Yeah, that, that’s, that’s really good, and that’s something we’ve talked about with other guests on the podcast. And for, you know, in, in psychiatry and mental illness, patients do sometimes just, you know, suffer alone or, or will, will brush things off more, more so than in other diseases. But it’s also very similar to other problems in medicine, right? With lipids or hypertension, you don’t want to wait, right? Same thing with cancer. You want to get that treatment, that intervention started as soon as possible. In, you know, framing it as, as that type of medical, you know, typical model may, may very well help, um, you know, hopefully get, get patients into the clinic sooner.

12:00 – The Engagement Gap: Disparities in Depression and Anxiety Care

Dr. Ben Everett: All right. Let’s move on. Um, so major depressive and anxiety disorders, they affect over fifty-seven million adults in the US alone. Data shows that Blacks clearly carry a disproportionate burden, more chronic disease, more severe illness at presentation, really because of the issues we were just talking about, that, that, that delay in getting in. Um, lower rates, uh, of engagement and treatment, you know, despite a, a comparable or higher symptom burden. What does engagement gap look– actually look like in the data? Where does it open up? Is it the presentation? Is it the diagnosis, the treatment initiation, or, or simply patients just not referring to, to clinic?

Dr. Aderonke Pederson: Yeah, and, uh, it is, you know, certainly the case that depressive disorders, and we’re talking about like major depressive disorder, um, and anxiety disorders, affect a very large number of people across the board, that for underserved populations or communities, whether that’s, you know, for Black adults or Hispanic adults, or I should say Black people, Hispanic people, because we, we also see research that this, the disparities in care affect young people as well and children in particular, and the loneliness epidemic we’ve sort of, you know, uh, talked about and, and more and more seek to address, uh, in terms of, uh, our public health initiatives. When you’re thinking about it as broadly as possible, you are seeing a trend where most adults actually never make it to a mental health professional’s office that a lot of mental healthcare happens in the primary care setting. And a lot of those symptoms come up in the primary care setting, and primary care doctors are, uh, overburdened, and they’re exhausted, you know, rightfully so, because there’s just not enough of them, not enough time, and you can only spend so much time with each patient. And so that sort of then balloons out make, uh, outcomes potentially even worse for underserved populations. Because when, when you think about, you know, the socioeconomic divide, those, uh, individuals who have more socioeconomic resources can reduce the impact of some of these factors we’re talking about when it comes to stigma and mistrust. They can reduce the impact of stigma as a fundamental cause of health inequities because they have more access. Uh, so the issue of, you know, when people, uh, might engage in care and what the, the engagement gap looks like, I, I do think it’s, it’s a bit of a universal issue, and where it becomes critical is when you have people who have multiple hits when it comes to engaging in care, meaning not only do they have to deal with the, you know, the low number of mental health professionals available, not only do they have to deal with all the access issues, but they then have to deal with the combination of, of the stigma towards mental illness alongside the stigma to… that is related to, like, racism, and they have to deal with, um, several other, uh, psychosocial barriers that compound together. I think it’s a universal, uh, problem that we have, you know, in the US setting, because that’s what I’m familiar with, but it’s also then- an issue that expands and balloons out health disparities for vulnerable populations

Dr. Ben Everett: Yeah, that’s… Yeah, that’s spot on, . Uh, um, I thank you for, for going that, uh, through, through that with us.

16:00 – Religiosity and the Limits of Past Contact on Future Stigma

Dr. Ben Everett: You’ve, you’ve done some interesting research on Black adults and relig- uh, religiosity, and you’ve shown that, that those that have higher religiosity show lower past or current stigmatizing behavior, but it doesn’t necessarily impact the future. Can you, can you go through that a little bit?

Dr. Aderonke Pederson: Yeah, this was an interesting study because one of the measures we were using w- you know, asked about, uh, would you be, uh, willing to be close to someone with a mental illness? And it, it was… The measure itself was asking about your past behavior, your current behavior, and your future intended behavior. so in terms of the past behavior, the questions were something along the lines of, um, have you ever lived with, worked with, had a relationship with, been friends with, you know, someone who is experiencing, uh, mental illness or mental, uh, illness symptoms? then asked the same person, would you be willing in the future to, uh, live with, have a neighbor or friend, uh, someone close to you, in close proximity to you? ‘Cause one of the ways we measure stigma is through s- uh, social distance as a proxy, your desire for social distance. It’s asking about your desire for social distance in the future and comparing that to your desire for social distance, or, or I should say, your actual lived experience in terms of social proximity in the past and in the current time. And one of the things we found that was interesting was, uh, people with higher, uh, religiosity, so, and religiosity was measured by, you know, how often people might attend church, how often people might engage in a Bible study or a, um, or a weekly study, and how often people participated in different forms of prayer or connection to the divine. That, that’s some of how those questions were asked. what was most interesting was this idea that Having past or current social proximity to someone with a mental illness did not translate into a desire for or willingness to have future proximity. In fact, for this particular population of people who also had higher religiosity, they were more likely to say, no, I would rather not be in proximity to someone with a mental illness in the future, despite my past experience and maybe because of my past experience. It was a correlative study, so we couldn’t say, you know, there was no causation that we were measuring, but it was just interesting to think about, know, as people, proximity by itself, and I think we’re going to get to this, this idea of contact, right? But proximity by itself is not enough translate into future desire and willingness and openness to proximity.

Dr. Ben Everett: Yeah, so many things I’m thinking of, of, you know, that could be driving that, that type of answer. Um, I’ll, I’ll be looking forward to, to getting you to unpack that more in the, in the coming years.

19:30 – Beyond Racial Categories: Heterogeneity and Migration

Dr. Ben Everett: Maybe one more kind of background before we really move into, into how you’re treating it and how you’re looking at it now. Um, you know, one of the conceptual concepts that your work has looked at is, is often in these, in these studies, it’s just like, okay, let’s look at white people versus Black people, and we see differences there. But people don’t really dive into then subgroups or, or, or a heterogeneity in those groups. And so you’ve done some of that work, and what have you found when you look at this idea of heterogeneity within a certain population?

Dr. Aderonke Pederson: Yeah, that, that’s a very important, uh, question whenever we’re talking about, whether we’re talking about Black people in the US context or, you know, even, uh, globally, or we’re talking about Hispanic people, Latina, Latino, um, people, or Asian, uh, or people of Asian descent, whatever group we’re talking about, or white people, um, what has happened often is when we do these research studies e- and clinical trials, like whenever we talk about drug clinical trials, uh, there is a kind of, uh… the initial question of do we have representation broadly across racial groups? That’s usually the initial question. Uh, then there’s this second question that often gets missed, which is if we have representation, say, of Black people in the study, we, did we consider, uh, the heterogeneity within the Black population? one of the things that’s interesting about that question is genetics is helpful here because there’s more genetic diversity within the Black population than you know, between, uh, racial groups, meaning we assume based on this physical attribute of being Black or being white, you know, that that, you know, some ways is superior, that the racial category is superior to the, to, let’s say, the genetic differences that might exist. And we know that there’s actually more diversity within, you know, say, the Black population than between the Black population and, uh, the white population. that really gets at this, uh, issue, uh, of- you know, diversity within. That’s what we s- we try to– we call it sometimes in the literature is the diversity within. Because the diversity within is important when you’re thinking about, talking about a Black person who has been here for several generations? Are you talking about a Black person who is a first-generation immigrant? Are you talking about a Black person from, um, an African country, or are you talking about a Black person from a Caribbean country? And that, that the, the sort of broad strokes, evening out and creating a kind of sameness prevents us from really understanding some of these psychosocial factors, because migration affects people’s health. Migration can influence health through things like, uh, your understanding of the local healthcare system and your access to insurance. Um, and certainly socioeconomic status is also a factor that we have to consider when we’re thinking about, uh, when we’re thinking about moderators a lot of times, psychosocial moderators. Main point here is just to make sure that we don’t assume sameness because of racial categories, but that we think about, um, language variance, we think about, uh, migration as a factor, and we think about these intersectional factors when we’re thinking about people, um, and not just place them into, like, racial categories

23:30 – The Power of Story: Why Narrative Changes Behavior

Dr. Ben Everett: That’s really important, um, you know, background and distinction, I think. Let’s, uh, th- this is the fun part. Let’s transition into, in, into the actual mechanism of storytelling. Why would a, a story, and it may not even be like my story, this is someone else’s story, change behavior in a way that, you know, maybe some literature or pamphlet or a, a public service address type of, type of commercial can’t?

Dr. Aderonke Pederson: When I was, you know, thinking about the podcast and coming on and, you know, really excited to, uh, to be here and to talk about this because, w- you know, as researchers, we get really stuck in, um, in the grind of our research that thinking about how to translate the information, you know, to a broader audience, uh, can be both exciting but challenging as, as well. But I appreciate, uh, the way you, you know, ask this question because from a… My goal in my answer is to be as simple as possible because I don’t want to lose people in the technicalities, you know, of things Humanity communicates through stories. That’s what we do. We use stories to build our relationships. If you think about the first time, if you have a longtime per- partner, um, or a longtime relationship with someone, usually the thing that drew you into them was out… When you take away, you know, sort of the maybe physical attraction to someone, or maybe you like their outfit or something like that, but the thing that really goes, um, beyond, uh, you know, the surface level is usually that you’ve shared stories, and you’ve shared experiences with each other. And what I, you know, ultimately mean by that is the thing that makes us most willing to let down our defenses and let down our guard with people is knowing their story, understanding their story, and in some ways welcoming them in. I, I wanna start at this just very fundamental level of our human experience, which has guided, in many ways, our relationships and the people we let in to, to our inner circle by hearing their story, by us sharing our stories with them, and by feeling seen by them, understood by them, and, and being able to relate to them, right? You say, “Oh, I also did that,” or, “I also went to that school,” or, “I also lived in that town,” you know, that no one else lives in in this whole place that I, you know, that I am merely visiting. Th- this principle and this concept is as old as the first communication, you know, we’ve ever had with each other, and I think what we’re missing out on in our healthcare systems today is that this idea of bringing people together and sharing firsthand lived experience narratives is a missed opportunity in our healthcare system that can have not just superficial impact, but actual real, measurable, clinical impact. That’s my simple answer, and I’m looking forward to getting into kind of the, the nuts and bolts of it. But that, that’s where I want us to start.

Dr. Ben Everett: Yeah, I, I really appreciate that. It, it resonates with me because I think you get to this idea of, of shared experience. It’s even though it’s someone else’s story, if it resonates with me, then it’s like a shared experience of, again, kind of the theoretical part of this. I can see how this would definitely, uh, you know, have a place in the clinic.

27:30 – Contact Theory: From Allport to the Psychiatric Ward

Dr. Ben Everett: Classically, theoretical bias for, for stigma reduction comes from Allport’s intergroup contact theory. It’s this direct– this idea that direct contact between two different groups re-reduces prejudice. But, you know, contact-based interventions are generally considered the most effective for stigma reduction, you know, in, in the literature. But naturally occurring, you know, contact is nothing like these brief structured contact used in, in intervention. How do you bridge that gap? And, and yeah, you can kind of start to talk about your intervention. It’s a video-based, um, you know, uh, app. People are actually seeing, they’re not just hearing. Can you kind of explain what’s going on with this?

Dr. Aderonke Pederson: Yeah, so there is decades, maybe, uh, 50, 60 years of work looking at what we call intergroup contact Within kind of the mental health space. Now, if I said that to a group of sociologists and anthropologists, they would say, “Whoa, it’s not 50, 60 years. It’s centuries of work,” that look at contact and, you know, reducing bias towards your fellow human being because of, uh, and through contact. what I like to describe it as is the mental health field has borrowed from sociology and, and anthropology this concept of how do we reduce stigmatizing attitudes and beliefs, um, using this concept that has been, uh, used and understood from the fields of sociology and an- anthropology. And in 1954, um, there was a publication by Allport which, uh, presented this idea of the intergroup contact theory and the idea that if you bring what we’ll describe as a stigmatizer in contact with a stigmatized person, that the stigmatizer’s prejudices or, um, biases would be, uh, cognitively interrupted is, y- you know, is how, uh, I would describe it, that there’s a kind of cognitive dissonance that happens when you think about, you know, if you have an idea of a person that you’ve never met and you say, “Oh, uh, people with schizophrenia are dangerous. You can’t be around them. They are violent and dangerous,” which is a stereotype that we have, um, in, in our society that is hopefully, you know, reducing over time, but it is a stereotype. And a good example is medical students sometimes come into our inpatient psychiatry wards, and they’ve never actually sat with someone who has schizophrenia and talked to them. usually within two, three, four weeks of being on their rotation, they might come to me as the attending and say, “Oh, I was playing chess with this patient who came in, you know, for a psychotic episode,” or, “I was interacting with this person and hearing their story and hearing, you know, um, where they grew up and, you know, what, uh, life has been like for them over, over the many years that they’ve been dealing with schizophrenia,” and the humanity of the person shows up. that close interaction– in some ways there are guidelines for that interaction, and the first thing is that the interaction is positive and that the interaction is voluntary you’ve used the word structured, and I do think that that is a factor, the structured aspect of it when we’re doing the clinical, you know, trials and the testing. But I don’t know that structured is necessarily, necessarily required when you’re talking about, you know, what it might look like at scale. Um, and interaction that this medical student has, they have a cognitive bias that they came in with, now they have a person in front of them that they’re interacting with, and they have to reconcile maybe the cognitive bias that they came in with, with the person sitting in front of them, asking them, “How was your day? How are you? It’s good to see you again,” and, “Let’s play chess,” and, you know. More than any kind of fact-based lecture you would give maybe a biased medical student, that meeting point in that, you know, group room where they’re sitting with that person leads to a cognitive dissonance that they have to wrestle with in that moment. How can these biases I have about them being violent be true when I’m sitting in front of this person, you know, who I’m having this, you know, very positive interaction with? that, that is, you know, sort of the grounding around, you know, those theories of, of contact and, and hopefully laying out an example that’s easy to digest.

33:00 – Fisher’s Narrative Paradigm and the Neuroscience of Story

Dr. Ben Everett: I like that. Beyond contact theory, there’s another separate theoretical tradition. It’s Fisher’s narrative paradigm theory, and it holds, and you alluded to this earlier, human communication is really fundamentally a form of storytelling, and that the narrative form itself has persuasive power, um, distinct from the facts it conveys. And so, h-how does this story generate the data or get, get to this part of Fisher’s narrative paradigm theory?

Dr. Aderonke Pederson: Yeah. What’s exciting about this field for me and this, you know, life pursuit is that there are several domains to come at the question from, and one of those domains is what sometimes we might refer to as like the DNA of a story. The nature of the story matters. If you tell a story that is extremely, you know, factual, superficial, and there’s no sort of emotive content in it, you’re less likely to remember the story. Like, your, your brain just doesn’t consolidate it. It doesn’t, um, it doesn’t, uh, you know, hold onto it because it, it doesn’t have certain elements that trigger certain parts of your brain. What’s exciting for me is I, you know, I’ve been sort of thinking about all the next grants and that sort of thing I’m gonna be applying for, and one of the things I’m starting to do is have these conversations um, with, uh, neuroscientists who are specifically looking at micro and macro structures of the brain and what areas are, um, uh, you know, sort of light up on fMRI when it comes to how a story’s told, and there’s some research around, you know, those types of things. Not my area of specialty at this time, but an important one to mention here, that the way a story is told, who’s telling the story, how you’re listening to that story, the context in which you’re listening to that story, all of those things influence what your brain is doing in real time. The way we tell the story, um, how we tell the story, uh, impacts how our brain, uh, processes that and how memories are formed, and that’s fascinating, right? It’s fascinating to think that can, you know, sort of isolate the critical ingredients of a story in forming some of these interventions so that we maximize the ability of the brain to not only, uh, engage optimally with that story, but memorize the story and retrieve it when necessary in making decisions. That’s kind of the micro/macro structure of the brain. The second piece I’m just gonna quickly mention is, um, that the, the emotional content of a story and the way it’s told, again, how, that helps with memory is important because if you put a slide deck in front of someone and show them different structures of the brain and say, “This is the part that depression, you know, is affected by, and this, these are the neurotransmitters,” and there’s no emotional salience to that, it, it’s going to impact memory consolidation at a significant level

36:30 – Shared Identity vs. Story Content

Dr. Ben Everett: Very interesting. You’ve also done some qualitative work and kind of gets to this idea of, of shared background and being able to identify with the, the storyteller. Someone who looks like me or has a similar history to me. And your respondents, you know, stated that that was really a key mechanism for increasing the acceptability of mental health services. Do you think it’s the shared identity that, that’s doing that, or is it the content of the story itself? Or is it, is it both?

Dr. Aderonke Pederson: Yeah, I, I think the, the question is, is a, is a really important one because from a scientific standpoint, we sort of wanna understand not only what aspects of, shared characteristics is most important, you know, in, in the way the story is told, but also if it’s both and which one is more salient or more important. And I, and I think, uh, one of the ways in which we approach this is it- it’s likely both and, but I think… But, but, but we are very complex as human beings, right? Uh, one hand, we want to see people who look like us, you know, experiencing something, but on the other hand, we also like to see people who don’t look like us experiencing something, and because that speaks to the univers- universality of the problem, that it’s not just, you know, people in my area or my neighborhood or my town or, you know, my local space that experience this, but that this is something that, that affects many, many different people, right? Um, so shared characteristics, whether it’s race, m- migration status or background, um, religiosity, if I’m a Muslim woman, do I wanna hear from another Muslim woman? If I am a pregnant woman, I surely wanna hear from other pregnant women, right, about their experience of postpartum depression or anxiety or psychosis, um, if that’s what I’m experiencing. Um, and if you’re a young person, and I think youth is a good example because young people likely wanna hear from other young people but also appreciate hearing from people who are further along, you know, in, in their, terms of generational status.

Dr. Ben Everett: Yeah. This is all really important background because what you’ve done now is you’ve kind of taken all of this data in a very, in, in a very explicitly user-centered way, developed an app, right? Because if the user doesn’t like the app or you try and give them something that they don’t want, you know, they’re just not gonna engage with it, I would imagine, right?

39:00 – Designing the App: A User-Centered Approach

Dr. Ben Everett: Tell us about your design process and, you know, kind of what went into it, and then just tell us about the app.

Dr. Aderonke Pederson: Absolutely. The, uh, everything we’ve been talking about in terms of contact, when you think about scaling it to, know, a district-wide, wide level, or a town or a statewide level, or national or international level, you run into a problem, right? It’s like, how do you create spaces where people are coming together, and it’s structured, and, you know, you, um, have guardrails and, you know, all of these things in place? And so a few years ago, uh, in talking to my mentors who are, um, uh, foremost, you know, stigma experts like Graham Thornicroft, who led, uh, a lot of the, mental health stigma work, uh, in the UK, and, um, and not my direct mentor but someone who I do wanna mention, Patrick Corrigan, who recently passed away, um, and wrote many of the, uh, of the papers and books on stigma here in the US over the last, um, few decades and has been a pioneer in this work, and whose work I’m sort of, you know, taking and trying to move to this next step, is how do we make stigma-reducing interventions easily accessible and easily disseminated to as many people as possible? And so video-based contact is something that there had been in, you know, some early conversations about in the literature, and now there’s more interest in it because if you think about it, on average, the… and this number probably goes up all the time. The average adult spends something like four to six hours on their phone, um, every day, and most of us are like, “I’m sure it’s more than that.” But at least four to six hours on their phone every day. And m- my hope would be to say, “Well, people are looking at their screens already.” And a lot of times the content is just commercial based, right? It’s just trying to sell something to people, um, and not necessarily, uh, clinically helpful. And so could we redirect some of that, uh, time spent on their phones towards, uh, a positive, uh, intervention like a, a stigma-reducing app? And the goal there is to share stories. And so if you said it was like a lecture-based app, no one would want to use that, right? But an app where people can hear stories and, and, and listen to stories that, uh, are directly relatable to what they’re going through and their experiences and their decision-making. Do I see someone? Do I continue to see someone? Do I see that therapist? Do I, you know, um, do I accept that, uh, clinical intervention that my doctor is recommending? Uh, and so we did a user-centered design phase of the study where we brought people in, in, in the lab and we, um, from the, from mock-ups and just, uh, paper prototypes to the actual physical prototype of the app, we worked directly with what we call end users, meaning people who would be the users of this app, um, down the road. We brought them in, we did lab testing, field testing, and, and now we’re in the phase where we’ve, uh, completed the f- the full intervention, and we’re testing it in a randomized control trial, for preliminary efficacy. And, and it comes to the acceptability of something like a digital app, there is something like, uh, you know, 10,000 digital mental health apps out there. There are a lot of them, and only 4% are tested in clinical trials. Uh, and of those 4% that are tr- tested in cl- clinical trials, most of them have poor engagement, meaning people just maybe use it one time and never use it again. I, you know, believe that. We’re not trying to replace mental health professionals. We’re not trying to replace psychiatrists or psychologists, um, or clinicians in the mental health space. think the role of digital therapeutics should be to, um, to walk alongside, uh, our, our mental health professionals and support the work they do because going back to that gap between onset of symptoms and, and engagement with, with a clinical intervention like therapy or medications, if we reduce that time, we are then dealing with less chronic and treatment refractory conditions, and that relieves the burden on our primary care clinicians and on our mental health, you know, professionals. The app really comes, uh, as an intervention that we hope is used in primary care settings, in, uh, community health settings where people might not have taken the d- ma- made the decision to see any kind of mental health professional, but they are starting to manifest or show symptoms that their, whoever is their initial, touchpoint in the healthcare system is interacting with them and offering them, you know, the, this, uh, intervention.

45:00 – Inside the Clinical Trial: Reaching a Hard-to-Enroll Population

Dr. Ben Everett: And so let’s talk a little bit more about your clinical trial. You’re specifically looking at Black adults with moderate to severe depression or anxiety. They’re not currently engaged in mental health care services, and this is a, a, a population that is very difficult to reach for mental health and, and frankly, just for, for really any type of clinical, uh, study, but especially in mental health. And so are you finding like enrollment, is it going well? Is it, is it about what you thought? Is it slower? Is it actually doing better when people hear about the, the format of, of the, of the app and, oh, this seems like something I might be interested in?

Dr. Aderonke Pederson: Uh, so we have completed enrollment, um, ahead of schedule. We, uh, are… We, we do a 12-month follow-up. Uh, so we have, like, a three, six-month, and 12-month follow-up. One of the things we’re, um, we’re proud of in, in this particular study is that most stigma-reducing, um, interventions do shorter-term follow-up. We get to see there are longer-lasting effects over time of the intervention after the initial exposure to the intervention. We’ve had very high, um, retention rates compared to digital apps, like traditional, you know, apps like we, we were just talking about, and there is a high level of engagement. I, you know, I think part of that is because the activity is not, know, “Do this CBT exercise,” you know, “Come back and, like, do a bunch of homework, and now go back and do this, like, you know, behavioral activation modeling activity.” It’s really very simple, “Come listen to a story, and listen to, you know, this story this week, and we’ll release the next story to you next week.” And it’s, very, low requirement for the, for the person. We were able to identify all those things through the user-centered design process and through really learning from apps that have had very low engagement. so at this point, we’re hoping to complete the trial this fall with the last patient doing their 12-month assessment. And, um, and we’ve done some qualitative feedback as people are completing their 12-month, um, assessment. And we, we are finding that it, seems counterintuitive that people could not just go on Google and find a story themselves. But when you think about it, it’s actually really hard to sort through the internet and find something that is relatable for you, is ideal for your current situation, your current, um, experience in that sort of direct manner. And we have all the tools now to make that easy, you know, for, for a patient coming through. Where have we found people? We have used our patient registry at Mass General for primary care, like anyone coming in for anything. They’re not seeing a mental health professional because that’s the whole point is that people who are disengaged. then we’ve used community outreach where we just go into the community and ask people, um, to, uh, to sign up if they’re interested in learning more about the study

Dr. Ben Everett: Well, ahead of schedule is, is a very good problem to have, right? It’s not a problem at all, and we hardly ever see that in clinical research. That’s really exciting. Well, I can’t wait to see the results. We’ll have to have you back on when you get that published.

49:00 – Primary Endpoints and the Question of Durability

Dr. Ben Everett: But let’s move to, to closing things out here. Um, you’ve, you’ve moved from qualitative foundational work to these feas– in, in the feasibility studies, active clinical testing. What is the evidence bar this needs that, that you think? Like, what’s the primary endpoint of, of your, of your story? And it seems like, you know, not only are you looking for that, but you’re looking for durability of effect as well, which is so important because, you know, if it’s something that, okay, you’re gonna get a quick… Well, you think of ketamine, right? It’s, it’s very helpful for depression, but it’s not durable, right? And patients have to come in all the time. Um, so yeah. What, what’s, what are your endpoints and, and, you know, what do you think is the, is the right level of evidence for, for this intervention?

Dr. Aderonke Pederson: Yeah. Exactly right. We’ve, we did a lot of information gathering through, uh, qualitative, uh, evidence-based work, and then did some cross-sectional quantitative, uh, work, and now, uh, are finishing up the randomized controlled trial, uh, that allows us hopefully to demonstrate preliminary efficacy of the app intervention. And our primary endpoints at this point are stigma, mistrust, and symptoms, so depression symptoms, anxiety symptoms. Using, uh, instruments like the Patient Health Questionnaire or the Generalized Anxiety Disorder questionnaire, to, to follow people’s, uh, symptomatology over time. I think what we’re finding is… And a bit surprisingly, because when we went in, we were just interested in stigma reduction in and of itself or, you know, addressing mistrust in and of itself, but w- a- and then certainly help-seeking engagement, uh, services, engagement in services, you know, as an endpoint. But it, it, it seems that the hypotheses that stigma and mistrust lead to worse psychological, um, uh, symptoms or psychological distress by themselves, that they, independent of the disease state, um, can lead to psychological distress, is true in what we’re finding because w- we’re seeing people’s psychologic- psychological distress decrease through what might be the potential mechanism of decreased stigma and, um, and, uh, addressing or decreasing, you know, mistrust when it’s at a very high level that interferes with, uh, service engagement. Ultimately, after this step, we are looking to do a fully powered randomized control trial at scale to, you know, hopefully demonstrate effectiveness. And then we have started the process of working with primary care settings to see if we can introduce the app alongside primary care, um, uh, clinical interactions compare, you know, when people have this alongside their regular routine care in the primary care setting, does that influence that time between onset of, of mental illness symptoms and engagement with, um, mental health care?

52:30 – Closing Thought: Naming Stigma to Address It

Dr. Ben Everett: I really like that. That really resonates. Final question. We try and end with a thought piece sometimes. Uh, if you could change one thing about how psychiatrists or just healthcare practitioners in general, like you mentioned, our GP colleagues, um, if you could change one thing about how they think about stigma and medical mistrust, what would it be?

Dr. Aderonke Pederson: That it’s in the room, whether you acknowledge it’s in the room, um, with you. It’s part of… It, it’s sort of the third person in the room with you, uh, outside of you and the patient. influencing their questions. It’s influencing their decisions. It’s influencing whether they actually follow your directions and your guidance, whether they tell you about a symptom that just came up that they are afraid or, you know, to tell you about. It’s in the room with you, and the question is, do you acknowledge its presence? know, and can, and can, can we help you, you know, as a clinician, um, in, in th- those interactions with your patients? Can we help you acknowledge its presence and address it and sort of hopefully get it out of the room so that you can actually do your job and what you’re passionate about, which is helping your patients effectively and optimally?

Dr. Ben Everett: That’s great. Yeah, if you name it, it makes it easier to– Yeah, you have to name it, you have to acknowledge it to, to, to, to be able to address it at all. Well, Dr. Pederson, this has been an amazing conversation. I’ve learned so much today. I know our listeners have too. Really take you, uh– thank you for taking the time to be with us today. And I love this format of the app, and also like what you’re doing because like you mentioned, how many apps there are if you look for mental health or, you know, the ones that drive me crazy, a neuroscientist, or play this game ten minutes a day and you won’t get dementia or whatever. And they always say, “Your neuroscientist approved.” It’s like, no, you know, we have to have structure, we have to have rigorous clinical backing, and we need some regulatory background also. And unfortunately, even the apps that have been approved, you know, the uptake has, has been very slow. And I, I think the way you’re going about this, if we can in-increase that engagement with the patient, then hopefully the patient can stay in the therapy and get some real durable, uh, you know, healing, um, from them. And, and I’ll– Just the idea of stories, the story matters, representation matters, building that into something testable, fundable, rigorous. It’s not easy. Um, I really appreciate what you’re doing, and I look forward to, to seeing the results. Um, and, and for me, if you take one thing away, it, you know, let it be this. Uh, stigma and medical mistrust are not just soft variables at the margins of care. They really are, you know, mechanisms with theoretical grounding, and, you know, they’re having an impact in your, in your interactions. With that, this has been the JCP podcast, insightful, evidence-based, human-centered