Episode 2: Exploring the Meaning of Wellness

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Research into conditions like bipolar disorder cannot happen without the participation of hundreds of people who sign up for research studies and programs like the Heinz C. Prechter Bipolar Research Program. In this episode, we’ll unpack wellness—how we define and measure it healthcare and research settings. We’re joined by Dr. Alexandra Vinson, assistant professor of Learning Health Sciences and co-lead of the Prechter Bipolar Disorder Learning Community. Stephanie Prechter, artist, philanthropist, a bipolar disorder research participant with lived experience and board member of the Prechter Program, and Dr. Sarah Sperry, director of the Emotion and Temporal Dynamics Lab and associate director of the Prechter Program.

Transcript

Host:

Welcome to Michigan Medicine Presents, a wide-ranging podcast series that will explore the progress in scientific research and innovation, historic roots, and the current state of conditions that affect us all. Join us for our third series, a three-part look into bipolar disorder.

Bipolar disorder is a mental health condition that is marked by extreme shifts or changes in a person's mood, energy, and behavior. Bipolar disorder affects nearly 11 million Americans at some point in their lives. And despite affecting millions of people, it is still often misunderstood and stigmatized. Throughout this podcast, we're going to hear from clinical research and lived experience experts from the Heinz C. Prechter Bipolar Research Program at Michigan Medicine.

In our last episode, we heard from clinical and research experts who broke down the science of bipolar disorder. They talked about diagnostics, genetics, and decision-making in the brains of people living with bipolar disorder. But we have to remember that research into conditions like bipolar disorder cannot happen without the participation of hundreds of people who sign up for research studies and programs like the Heinz C. Prechter Bipolar Research Program. The stories and perspectives of people who participate in research are crucial to understanding more about how bipolar disorder affects the lives of real people when it comes to things like jobs, relationships, and how we view and understand wellness.

For this episode, we're joined by Dr. Alexandra Vinson, assistant professor of Learning Health Sciences and co-lead of the Prechter Bipolar Disorder Learning Community. Stephanie Prechter, artist, philanthropist, a bipolar disorder research participant with lived experience and board member of the Prechter Program, and Dr. Sarah Sperry, director of the Emotion and Temporal Dynamics Lab and assistant director of the Prechter Program.

Let's unpack wellness, how we define and measure it in healthcare and research settings and how the Prechter Program is centering lived experiences and wellness. Stephanie, I want to start off this episode by approaching the topic of wellness with you. I've had the opportunity to talk to you over the last couple of years and learn about a concept that you've defined, this concept of we versus I when it comes to mental health. Tell us about this.

Stephanie Prechter:

I actually think it's attributed to Malcolm X, that was who quoted wellness, being part of the we, part of a community, having a sense of belonging. Versus the I, being an illness and feeling that sense of separation. And so that's a good note to start on because I think a lot of the challenge that I've grappled with, with my own diagnosis, having been diagnosed at 21 with bipolar, having been hospitalized over a dozen times in five different states, experiencing treatment in and out of hospital and clinic, for the most part I found community within my family, within my faith, within my art, within these kinds of connections. And a lot of times, in sickness, when I'm feeling ill, illness, I, I feel separate from whatever it is that I am connected to. So there's a lot of work, there's a lot of layers within that and I don't know if that answers your question.

Host:

Well, I'd like to learn a little bit more about your life story. You're a really important person in the story of the Heinz C. Prechter Bipolar Research Program. So talk to us a little bit about that.

Stephanie Prechter:

It always makes me really emotional to talk about. To your point, this program is named in my dad's name. He died by suicide in 2001, and he was a visionary, living with the diagnosis and at the time it was manic depression and then it being called bipolar, which we can talk more about. There's just so many things to talk about. But for the most part, our family is devoted to working just to help people better understand what this all means. I think because of what happened to our family and the fact that I have been given this diagnosis, I need to stay vigilant about my own health and it's a recovery mindset. I'm committed to that and this is the work that's happening around it.

Host:

Your family is really dedicated to centering those lived experiences. It's very clearly important to you. I have had the opportunity to talk with your mom at length as well, and it's very clearly important to her as well. I think that shows true to the program as well. Part of what we do with the program is making sure that we're taking care of our research participants in a way that means we are making sure they're at the center of this conversation. So centering community and making it a priority as it relates to an individual's wellness is incredibly powerful.

I want to jump to Dr. Alexandra Vinson here. Dr. Vinson, your work is in the University of Michigan Department of Learning Health Sciences and establishing learning communities. What does that mean? What are learning communities?

Dr. Alexandra Vinson:

Well, the Department of Learning Health Sciences is a really cool department. It's the first of its kind. In our department, we focus on identifying the fundamental principles of learning health systems and figuring out how to build them. The learning health system is a newish model that's designed to promote healthcare improvement by organizing research and improvement projects around a shared problem of interest, which is developed by a multi-stakeholder learning community. This means a few things, that a group of people from a different professional and personal backgrounds needs to come together and learn how to work together. This group chooses a focus area for their work that they collect data about the current state of healthcare in a certain area, they can then identify areas for improvement and work together to design and implement new ideas for improving healthcare. Ultimately, they need to collect data to see if the changes they made resulted in improvements.

So when we talk about learning communities, we're talking about a group of people that includes people with lived experience, family members, community partners, clinicians and researchers who come together to form a team that develops ideas for healthcare improvement. These ideas can come from reviewing data about how care is provided in a clinic or how people engage with their care. And so everybody in the team should agree that the improvement projects are important and strong improvement ideas generally take up issues that are relevant and meaningful to people with lived experience.

Host:

This is actually an incredibly cool project, I think the Prechter Program is doing, and I really think it goes to show how we're focused on making sure that people with lived experiences are at the table and they're not only at the table, they're inviting other people to be at the table so that we're not having these conversations that are just from researchers, that are just from healthcare clinicians, that this is a full circle conversation.

In 2022, you helped found the Prechter Bipolar Disorder Learning Community. You touched a little bit on this that it's involving a lot of different types of stakeholders, but who's in this group and what does this community do?

Dr. Alexandra Vinson:

That's a great question. So the Prechter program is building its own learning health system, and the first step is to build a learning community. In our learning community, we have people with lived experience, family members and caregivers and researchers and clinicians and other types of staff like program managers and people like myself. I'm not a clinician, but I am one person who's helping to build this group.

I co-lead this group with Claudia Diaz-Byrd, who is a program manager in the Prechter Program. And every month we come together as a group to generate and work on improvement projects for both improvements within the clinic and also in the parts of life that straddle the clinic and everything else. And so we've identified some areas in bipolar disorder care and in everyday life with bipolar that could be improved and we come up with these ideas to try to create improvement. So we've worked on projects to try to link people with bipolar disorder to resources that might help them access care and improve their knowledge about BD and relevant community services that they can access. This takes the form of a resource list that is available on the Bipolar Clinic website through Michigan Medicine. And another one of our ongoing initiatives has been to develop a new way to help people measure and track their wellness.

Host:

I want to jump to Dr. Sperry here really quickly because Dr. Sperry, you've been a really integral part of these wellness surveys. I would love to pick your brain a little bit about this. So you're a researcher and a clinical psychologist who works with patients and participants who live with bipolar disorder. Why are these wellness surveys so important?

Dr. Sarah Sperry:

Thanks for the question. As a clinician, one of the things that I've heard over and over again from my clients is, "You give me these surveys when I come in for my visit and they ask me about my depressive symptoms, they ask me about my anxiety, they ask me about insomnia, and they ask me about whether my mental illness has prevented me from doing my chores or job or interacting with people. And every week when I fill these out, I feel like all I'm being asked is how wrong is something wrong with me and that doesn't always reflect what my day-to-day life looks like. I might be having symptoms, but I might've had some accomplishments this week that are outside of my symptoms that gave me purpose or meaning or made me feel like I wasn't just my illness and that I was living well."

This sentiment came up in many of the first meetings of our Bipolar Disorder Learning Community that Dr. Vinson was just talking about. And so we said, "Well, let's try to change that." And if both our clinical patient-reported outcomes and the measures we provide research participants are so illness focused or symptom focused, and even our well-being measures are how does my mental illness prevent me from doing X, Y and Z? What would it look like to have a measure that was more strength-based, that was more individualized, that was more reflective of one's purpose, one's agency? So we decided to tackle this as one of our first projects with the Bipolar Disorder Learning Community. What that looked like is doing some research. So we went to the literature and looked for different measures of well-being. We didn't like most of them, but we definitely stole from them. One of the principles in learning communities is, and I'm going to butcher this, but it's something like, "Don't start from scratch, learn from what has worked well in other things."

So we took components of what had worked well from other measures, but then we really as a team thought about what are the things that we think would be important to measure and how should we ask it in a way that's palatable to the people who it's actually supposed to serve? And so we worked over about four or five months to create this measure iteratively, and we've now sent it out to the research participants of the Prechter Program to complete, and we sent it out twice so we could see, do people's responses change and is it helpful to track over time like we do in the clinic?

Right now, we're in the process as a team, including everybody from the Bipolar Disorder Learning Community analyzing that data to make sure that people are finding the measure helpful, making some tweaks to the measure, trying to make sure it is as accessible as possible in both a clinical and research perspective. And then we hope to administer it more widely to see if this is a measure that could be administered as a patient reported outcome. Imagine having that data as a clinician coming in to say, "Oh, I don't just have to tell you your PHQ-9 depression measure is a moderate this week, but I see you had all these wins with your child this week. It would aid clinicians in being more strength focused and more individualized. That's where we're at with the project and I'm happy to answer more questions about it.

Host:

Absolutely. Thank you for sharing that. I think it's absolutely fascinating that we're trying to center wellness. I know that a lot of our research participants are artists and they're creatives and they're people who are qualitative, not necessarily quantitative, and it's really hard to capture those qualitative features in something that is so quantitative, like a patient health questionnaire, a PHQ-9. When you come into the clinic and you're ranking one through five or yes or no, when there's things that really contribute to our wellness, things like art, things like family, things like sports, and just taking care of your whole holistic human being and centering the human being at wellness. So it's really cool to see that we're making these small steps, but really important steps toward those changes. And Stephanie, I want to get your perspective on this because you are an artist and because you're someone who really centers that wellness as a whole holistic thought process.

Stephanie Prechter:

Yeah, thank you. And I've had conversations with everyone on the team around learning health. I'm really excited about the model because I see it as a shift in giving more ownership and agency to the participant, to the person with lived experience to not feel as if it's us versus them. So back to the we mentality. And I know in my own treatment in times past, I felt as if the psychiatrist or my treating team would know all about me and tell me what to do with my life. That's not the case. So the goal is to be sustainable in living and to understand really how you regulate your own emotion around it.

And so going back to your question, I feel I think that this model really inspires this sense of having a stake in it, being a stakeholder, and Dr. Vinson can speak more on that, and it's been so inspiring to know her and to know that yes, this is small shifts, but even the model in of itself is very dynamic, so it moves. It's not going to be static. I think a lot of what we have been working with in terms of treatment has felt very archaic. So this is really exciting for me.

Host:

Yeah, and I would completely agree with that. It is an archaic system and we know that the mental healthcare system really has a lot of work to be done. I think programs like this and communities like the Bipolar Disorder Learning Community are a really great shift in that focus and treating us. Like we all have something to say and it's all valuable. It doesn't matter if you have a PhD or an MD or you don't have any letters after your last name, but we have people who have these really valuable perspectives and these lived experiences to say, like you said, "You can't tell me what is going on in my life. I can help report what I'm feeling and how I'm interacting with my day-to-day." But some of these things are not sustainable and really learning what works for people, what doesn't work for people. Dr. Vinson, I want to maybe get a little bit more of your perspective on how you see these changes really benefiting programs like the Prechter Program and the mental healthcare system.

Dr. Alexandra Vinson:

The work that we've been doing to develop the wellness measure in the Bipolar Disorder Learning Community really exemplifies the potential of the learning health system model. And it speaks, and I think one of the reasons why it's been successful so far is it really resonates with things that already part of the culture of the Prechter Program, like a community orientation, like a sense that multiple different stakeholders, multiple different types of healthcare professionals, patients and their family members really matter when it comes to providing high quality care. And that we can have a community that is about care, that's about what happens outside of the clinic, what sort of things support wellness, all of that can come together under one big umbrella.

When we have these discussions and this co-development work within the BDLC to build the wellness measure and to test the wellness measure to evaluate the wellness measure, these are things where we work together as a team to decide what's important to decide how we'll move forward. We split different responsibilities up according to the different skill sets that are needed to do each type of task. And then wherever we can, we democratize participation in the evaluation and the analysis work, in the writing, in the presentation, and in the meaning making about what this measure can tell us about wellness and also in how we should move forward once we figure out what the wellness measure, what type of potential it has for us in the clinic and in the research space.

Dr. Sarah Sperry:

Yeah. I just want to piggyback off of what Dr. Vinson just said is what I love about this learning health model and love about what we're doing is that the goal of this project and the development of the wellness project is not just yet another scientific publication or something that we can put out into the field with with our name on it. What I'm really excited about is sure we're developing this measure, but if it works well, I'm going to take a step back and describe the measure a little bit to help explain the potential of this measure.

One of the things that the measure does is ask people to actually qualitatively write out, what have you done lately that has promoted living well for you? We do break that up among different domains and categories. And this is something that we did pull from the literature, what kind of domains repeatedly come up when people living with bipolar disorder describe what contributes to their day-to-day life? That's things like purpose, agency, achievement, connectedness, jobs, spirituality, creativity. So we do break it down into domains and we ask people to actually write about what they've been doing lately that falls into that category.

An example for purpose, for one person, purpose could be, "I got a raise at work and that made me feel really valuable and gave me a lot of purpose." For another person that could be, "This week, I was able to sit for several hours and create a piece of artwork that gave me a sense of connectedness and purpose in this world." A quantitative measure will never be able to capture that difference, but the qualitative does. And then we add the quantitative and we say, "Okay, you've identified these activities that you've done to promote living well. Well, how do you think you've been doing in terms of engaging with those activities? Do you feel like you have control over engaging in that activity? Do you have enough time to engage in that activity? Do you feel content with that being the activity? Do you... " I'm trying to remember all five.

Yeah, a sense of achievement, like, "Did you feel like you made progress on or have a sense of achievement over these?" So we can get these quantitative ratings, but they're now grounded in the individual's own perception of what it means across those domains, which is really unique. That's the structure of the measure. So we can then take that data, we can have a quantitative one. If a doctor wants to just take a quantitative rating and take action on it quickly, great. They have that. If we want to do fancy statistics to see how people's wellness... Does it all just fall into one category or are there really 10 categories of wellness? We can do these "science" with it, and I'm doing quotations.

But the qualitative piece we can now take and also analyze that data with the, I'm very thankful for Dr. Vinson, who has expertise in what's called mixed methods research where you combine the qualitative and quantitative because I'm more of a quantitative person, but we can learn from this qualitative data. Let's say we give this measure to a thousand people in the Prechter cohort and we see an activity that's just showing up over and over and over and over again as promoting wellness. And that's something that we could help facilitate for our participants. We could create a group for it or a space for it or protected time for it, or we could put more resources into it. Well, that's then the next part of the learning cycle. We've created a measure, we've implemented it, we've learned from it, and now we're back to putting something out into the world and then we can test that again. We can make it better and we can consistently learn, make the Prechter Program stronger, improve people's wellbeing, improve our measure, the possibilities kind of feel limitless to be honest.

Host:

That's incredible. There are so many thoughts on that, but I want to ask the group, do you see this as something that can be implemented at large, let's say at other mental health clinics and treatment centers in Michigan, in Detroit, across the U.S., in the Midwest, in North America and everywhere else? I mean, this is something that is really cyclical, and I think that's what is so fascinating about learning health system is that it's taking research, it's learning from the lived experiences. We're working that back up to the clinic and ensuring that people's doctors and therapists and other treatment professionals are able to look at a person as a whole person and look at all the different dimensions of that person's wellness and health. So what do we think? Do we think this could be put at a large level here? Do we think it could be adopted by other sorts of programs and healthcare clinics?

Dr. Alexandra Vinson:

I think the spirit behind the wellness measure is something that could be taken up immediately. The idea that we could move away from or add new things in addition to the conventional types of clinical measures that really focus on symptom burden and functioning, we could add in the idea that a strengths-based approach to wellness is essential, that it does reflect what it's like to actually think about your wellness as a person. And the idea that these measures could be individually tailored is really important as well, because what helps me stay well may not be the same thing as what helps Stephanie stay well or Dr. Sperry stay well. And so we need to have the ability to customize the way that we talk about our wellness and to track that over time.

I do think that that's one of the biggest advantages of the wellness measure is that you're not just thinking about an abstract domain like hobbies or purpose or work or school. You're actually asked, as part of the wellness measure, to think about specific examples of what that looks like for you. I know Dr. Sperry, you and I filled it out as we were testing it to see if it would work. I remember thinking really hard about what I would write down as my examples, and I remember thinking about how different my things were from yours, but that there were still some common threads. I think we both have a focus on art, for example, that brings all three of us together. I think that that's something, even if the wellness measure itself isn't widely taken up everywhere, everyone can learn from the spirit of this.

Dr. Sarah Sperry:

But I do think a goal is to get it out into the world. I have no doubt that even the process that we've gone through so far, it's been very valuable to me as a researcher, as a clinician, our stakeholders, our learning community. But I view it as my duty also as a clinical psychologist and a researcher that my work goes beyond Southeast Michigan.

When we're ready, I very much plan to promote this measure at scientific conferences, to send it to my coworkers and collaborators across the United States and maybe even Europe. Researchers in the UK are actually very focused on well-being, so I've already had some conversations with them and they're excited to see it once it's ready for prime time. So I do think that it could be very, very helpful. I think we're not the only ones that have this mindset that there needs to be a paradigm shift to think more about wellness. But I think it does take somebody stepping forward and providing a tool to make that easier. And I think we do have the potential to be that person and disseminate it and have other programs learn from it as well.

Stephanie Prechter:

I love this conversation and I think from my standpoint, I think what Dr. Vinson mentioned about having it be a culture shift, it feels as if that needs to be strategic. I think doing it in the way in which we're doing it, it sounds like yeah, there's this group that you meet monthly and coming up with these measures collectively and having it be a democratic process is awesome. And then I want to really emphasize the connection between research clinic community and what that looks like in an integrated way and how that builds out. And so then I start thinking about integrated care and we have efforts, ongoing efforts around the country and pockets, but that's not something that's mainstream. And to really see clinic working with research with community seamlessly, that's a dream where everything informs one another. So that's inspiring.

Host:

Yeah, and I love that we're seeing it happening in real time. I know sometimes research moves very slowly. Every quarter we report out return on investment and deliverables. It doesn't work that way always. But it's really cool to see that we have boots on the ground. The program is really making a lot of efforts. We're meeting monthly, which might not seem like a lot to people, but we have a lot of people from a lot of different walks of life who some folks work nights, some folks work 9:00 to 5:00. So it's great that we're able to bring this really diverse group of people who have a lot of stake in this, who have a lot of interest and passion to make these integrated care changes. And hopefully we can really start the larger wheel of healthcare and mental healthcare in the U.S. moving a little bit faster. And we have something tangible in our hands here, like a wellness measure.

I want to quickly jump over to you Dr. Sperry. So your work, you also conduct research in the Emotion and Temporal Dynamics Lab on mobile and wearable technologies for mood disorders. What do you think tech like this can help contribute to wellness and measuring wellness?

Dr. Sarah Sperry:

Yeah, that's a great question. I think there are a couple of opportunities. One is is that technology is a part of all of our lives. We all have different levels of what we call digital literacy. Some of us live exclusively on our phones and without our phones, we would not be able to do anything. And then there's others who have a cell phone for emergencies and it kind of sits on the table in their home and they don't really touch it much. So there are individual differences in that, but by and large, people are signing in for their doctor's appointments online or on their phone. 98% of people in the United States have a smartphone at this point, and many more have wearables. So things like Fitbits or Apple Watches or Oura Rings. That percentage of that is much lower than smartphones. But regardless, we are living in a digital world right now.

And so I think it's on us to make sure first that this measure can be completed easily and it's user-friendly and potentially is used for self-monitoring. And so what I mean by that is that somebody can reflect on what they're doing and write about it, and that's just at the touch of their fingertips. So I think being able to adapt this measure to be in an app or something that somebody could use easily, on the go, and then have the option of sending that data to their doctor if they want to or just using it themselves in a self-monitoring capacity or reflective process.

I also think that one of the things that comes up a lot and is a focus in the Prechter Program right now is again, wellness. There's the wellness of how I define my activities, and then there's the health and wellness that the medical system focuses on. But by and large, one of the things that our participants or my clients talk about a lot is the role of exercise, of healthy eating, of sleep. All of these things are critical to be able to enact the activities that promote their well-being. So I also see a place where if somebody's goal, let's say, for wellness, means that they are going to the gym four days a week, or even just walking 30 minutes a day, again, allowing for those individual differences.

If that is something stated, well, imagine an app where you're putting in those goals and then if you have a Fitbit or you have a device, it feeds that data back to you in a visualization that is meaningful to the participant and helps them track their goals. I think that's a little bit different than just smacking a watch on somebody and saying, "Okay, monitor your steps, get 10,000 steps a day." I don't know about for everybody else, but it can be hard for me to get 10,000 steps a day. But to allow for more individualized goals I think would be great. We do know that self-monitoring itself is an important aspect of psychological maintenance of bipolar disorder and relapse prevention. So I imagine a world where our well-being measure could also integrate with some of these mobile or digital technologies to allow monitoring, goal progress, things like that.

Host:

I see it as an accessibility thing as well. Like you said, we all sort of have smartphones at this point in time, maybe wearables, and it's a lot easier. And sometimes to track those goals, to track what you're doing on your phone or computer, I know my own therapist has said journal. I can't tell you how many times she's told me that. And I'm mostly an analog person. I take a lot of handwritten notes, but even then, just journaling my own ups and downs and my own tracking of my own mental health. I can't be bothered sometimes. So it's a lot easier in many ways, and it's really helpful to have that at my fingertips. Maybe I'm taking the bus and I'm thinking about, "Hey, I'm going into work for the day. I'm not feeling great. Let me just write this down super quick in an app or an iPhone note." Versus whipping out a piece of paper. So I love that it's thinking about making things accessible to people, breaking down barriers. That's something that we have to be constantly doing when it comes to mental healthcare.

Stephanie Prechter:

I'm also analog and I love journaling, but I think that this kind of speaks to this ecosystem of wellness and how do we encourage people to maybe structure their own and sort of initiate that. As you were talking, I was thinking about the importance of budgeting energy and the way that you regulate energy. And that's been huge for my own, I say brain health just because it's empowering for me to think about how do I treat myself and my psyche and my brain, how do I help myself be the best person I can be and be more tuned to these different mood, facilitations, and not define myself as this diagnosis, but just use it as something to better understand it.

Host:

Yeah.

Stephanie Prechter:

Yeah.

Host:

I think it's really helpful to have whatever option is available for other people because like we've been talking about, it's not a one size fits all. It never has been. It never will be. So we need to make some changes toward that. So I really appreciate the efforts toward making mobile technologies a greater part of how we look at ourselves.

Stephanie Prechter:

Can I say a quick thing about one size fits all? So important because this diagnosis can be given to a million people and we will all manifest it in very different ways. I think the beauty of the research and my experience, having worked with the team and having been involved really from the beginning has been a more clarity around what it is and what it isn't and how it manifests and being sensitive to the treatment, right?

Host:

There's an increased effort for training programs, mental healthcare clinics and research practices to better capture wellbeing. That's what we're talking about today. The Prechter Bipolar Disorder Learning Community being one example, but there's a lot more work to be done. And we know that work can't be done without hearing from more and giving a seat at the table to people with lived experiences. So I asked this group, why is that so important and why do we need to spotlight and center those voices? We've talked a little bit about this, but I want to hear in your own words, why is that so important?

Dr. Alexandra Vinson:

Well, in a learning health system, you've got to figure out how you're going to organize the activity that you do or else you're going to boil the ocean or never accomplish what you want to do. People who come to this work with lived experience are often the very best people for saying, "How should we focus our work? What is most relevant and meaningful to people who live with a certain condition every single day where it touches all the facets of their life?" Or for family members who come on behalf of a loved one who have very deep experience as caregivers, it's very important to include those people who have lived experience and to really honor that experience as a form of expertise that's absolutely essential for planning healthcare improvement work.

We're always going to find a way to organize our work, but often we implicitly center the needs or the scientific agendas of researchers or the particular structure of a clinic flow, but we don't always put the needs of people who have a condition at the very center and then build things around that. That is something that the learning health system asks us to do explicitly as part of the model when we build learning communities and when we do learning cycles. And so from the very beginning, I was optimistic and very excited to be working with the Prechter Program to build a learning health system because I knew that that was already part of the culture of the Prechter Program. And that has proven to be the case. And now it's the nitty-gritty work of putting those values into practice through our everyday work as the Bipolar Disorder Learning Community.

Dr. Sarah Sperry:

I have a really good example that I think exemplifies why it's so important. As trainees, we are taught about bipolar disorder in a textbook. We read about the symptom criteria from the DSM that need to be met for a manic episode or a hypomanic episode or a depressive episode. We are boiling things down to arbitrary numbers and check boxes, and that's how we learn about it. And so most researchers go into the field and clinicians go into the field thinking that bipolar disorder is an episode than euthymia or a switch. Like it's these very concrete states that are easily differentiated, that are separable, that are orthogonal, that are just these discrete episodes. It doesn't take you very long if you sit with somebody with lived experience to learn that that is not the experience that they describe.

Our clinical trials historically for the last 50 years have been built on measuring a linear symptom change on two scales, the Young Mania Rating Scale, and the Hamilton Depression Rating Scale and saying, are they in an episode or not? Or. Are they mild versus severe? It frustrates the heck out of people, and I really truly believe that that is why we have not moved the needle further in the terms of treatment development. So all it takes is sitting and listening to somebody's experience, and you ask them, "What is frustrating you most about your residual symptoms right now? What is hardest? What is getting in the way of your relationships? What is getting in the way of you living your day-to-day life?"

And what I heard over and over again talking to research participants, talking to clients throughout my training was this more day-to-day difficulty with emotional reactivity and feeling like a lack of control over one's emotions and reactivity. Yet when I go to the literature, I talk about this, people say, "Oh, you must have misdiagnosed them. They have borderline personality disorder because that's when people have mood instability on a day-to-day basis, that's not bipolar disorder. Bipolar disorder is a discrete episode of mania or hypomania or depression or euthymia, a return to normal." And that was just not lining up.

And so for the last six years, my research has actually been, this is kind of a newer area for me, my research has really been focused on how do we measure that emotional reactivity in a meaningful way to see if our treatments are working to develop more proximal outcomes that are related to an individual's experience. I have a grant to do that right now, and I'm really excited about this work and I presented on it, and my inbox flooded from people with lived experience saying, "Thank you for finally describing bipolar disorder as I experience it. It's not these discrete episodes, it's micro episodes. And my doctor just says, 'oh, that's just mood instability. That doesn't matter. That's not a part of your pathology.'"

And I'm like, no, that is such a core aspect for many people, not all people, but for many people living with this condition. And if I hadn't listened and really thought about that, I would've just been another researcher who used the YMRS and the HAM-D to measure outcomes in my studies. Whereas this has actually formed the entirety of my research program. That never would've happened without listening to the voices of the people who were actually living with bipolar disorder, not what I learned in a textbook.

Stephanie Prechter:

I'm going to get emotional again because I... So I am 44 now, and my dad had died July 6th of 2001. So we just went through the 23 years of having passed. And my nieces were here this past weekend and I think a lot about the work that we're doing in terms of generations, and we talk about generational trauma, but I think we can also talk about generational gift and the kind of gift that I've been given. When my dad was alive, he had some severe episodes that were always under the radar. He never came out with it. He was never public about it. Even when he went to Mayo and he was prescribed lithium, he would flush it down the toilet. He didn't take it. He never acknowledged that that was something that was happening.

He lived such an amazing life. He was a visionary, and he impacted... I mean, people still come up to me and talk about the difference that he made in their lives. I just think, what could he have done had he been here? And then I watch my nieces and I think of my own self, and they ask questions about bipolar, and they have a different model. There are different ways in which we can treat this and manage this. I think that the beauty of including people with lived experience is to give people sort of this lighthouse and this inspiration and say that you can come back from the brink of suicide ideation. You can come back from psychotic episodes, your brain can heal, but you have to be vigilant with it.

And yeah, this is a very complex, very layered issue, and I understand that. But now more than ever, especially having found my art and still working through my faith and seeing my family, I just feel like it's such a power and a responsibility to be able to step up and to share about what it is that we go through and how, yeah, it isn't the easiest to manage, but with people who are caring and passionate. We weren't having these conversations even 10 years ago. I mean, I had a lot of faith and a lot of optimism for what we can do. I think one of my jobs in life is really to show my nieces and to show the next generation that living well is possible.

Host:

I love that you talk about the next generation, and it brings a lot of hope that the kids these days are able to say, "Hey, I'm not okay. Hey, you need to help me because I'm not okay." And because we're able to have people like you, Stephanie and Dr. Sperry and Dr. Vinson to say, "We need to change the way things are going, and I'm going to tell my story. I'm going to be loud about it. You're not going to tell me that it's not the truth because it is. And these are my experiences, and you cannot deny me those experiences." And those experiences have to inform the way that we are providing and delivering care to everybody, whether you have bipolar disorder or whether you have a different type of condition. These experiences these day-to-day, whether that is looking one way for some person or a different way for someone else, they're all meaningful. And we can see it changing in the younger generations.

Dr. Alexandra Vinson:

And we can also see that when there are people with lived experience who are ready to contribute, healthcare systems and other types of institutions actually need to be prepared to welcome additional stakeholders to the table, to recognize the value that people with lived experience bring to research, to improving healthcare delivery. Not just in a way where they're giving feedback, but in a way where they're actually shaping the agenda.

This is something that has been a major focus within the learning community where we spent quite a lot of time actually preparing to welcome new stakeholders with lived experience and family members so that we could all come together as one coherent team. I see it as a tremendously exciting part of the future of mental healthcare. I think it speaks to what Stephanie was saying about power, feeling like you have a personal sense of power, and then being able to contribute that and to being able to contribute passion and motivation through collaboration and participation in a learning community.

Dr. Sarah Sperry:

I'll add that one of the things that I've noticed in this culture of trying to reduce stigma and talk about things, it's a huge step. It's a huge step. But also just talking about what one's symptoms are is just one piece of the pie. And I want to highlight something from Stephanie's story that she just shared, is that she's also trying to shape what it looks like to live well. Right? And I think part of stigma reduction, yes, is education about what is and isn't bipolar disorder or what is and isn't this or that. But part of it is also having examples of people living well, regardless of whether they have symptoms, regardless of whether they have a handful of hospitalizations and points in their life when they were really, really low. But look at them now and look at what resilience is and what vigilance is and what commitment is to recovery and living well. That piece of the puzzle is also really important to highlight, so I'm really glad that we're doing this podcast today because I think that's one form of us to be able to highlight this.

A lot of people with bipolar disorder that I have spoken with, if you ask them, "Would you rather live without it?" That's a complicated question to ask because some people are like, "Sure, I would want to live without the symptoms and having to take the medications. But I don't know that I would take away my personality, my creativity, my drive, my goals." Which some people attribute to the condition itself. And so I think it's also highlighting the successes no matter how small or large in people with lived experience. And that's part of stigma reduction as well.

Host:

I want to ask this group one last question. What does wellness mean for you or what makes you be well?

Dr. Sarah Sperry:

This one's kind of easy for me, and these two have heard it several times. For me, it's three things. It's spending time with family. It's having a creative outlet that I prioritize on par with everything else. For me, everybody knows that's Wednesday night pottery. It's my time to go and not think about science. I literally can't check my emails because my hands are covered in clay. I need that time to de-stress and to re-center and be away from it all, and it's my dog.

Host:

Yeah.

Stephanie Prechter:

Wellness for me, I mean instantly, yes, I go to my art and the river, the Detroit River. That means wellness for me. What else? Being connected with nature, matching the pace of nature to my nature and in tune with that. Meditation, I have a practice on that. My faith is ongoing and I just feel so blessed to even wake up in the morning and be able to function. Wellness is being connected with family and service. I think that giving back is a huge part of my wellness.

Dr. Alexandra Vinson:

For me, wellness also involves a great deal of creativity. Right now, seasonally, it's gardening. The ability to go out and tinker to around and create something from seeds or from small starts, that brings me a lot of joy and is a good release from all the other things that are going on. Similarly, you can't check your email if your hands are covered in dirt. I also have a great deal of knitting that I do in the wintertime when I can't garden, and I am someone who benefits from having a fair degree of novelty. So I love to switch it up geographically, travel, visit cities, and walk around and look at things. I always find that that brings me something that I don't always get in the piece of home.

Stephanie Prechter:

Yeah. I appreciate all of you sharing all wealth of knowledge from everywhere of what's going on at the Prechter Program to our own life stories, and I think it's really valuable to have these conversations. So thank you all. I want to close this out by saying you heard from Stephanie Prechter, Dr. Alexandra Vinson and Dr. Sarah Sperry for our second episode in our three-part series, Michigan Medicine Presents: Bipolar Disorder.

Educational activities on bipolar disorder, like this podcast, are made possible through generous contributions from people like you. If you're interested in making a gift to support educational materials and events or the vital research of the Prechter Program, please send an email to [email protected]. That's [email protected]. You can also learn much more about the Heinz C. Prechter Bipolar Research Program and sign up for e-newsletters at prechterprogram.org. And don't miss the two other episodes in this series. You can find these and other Michigan Medicine podcasts at uofmhealth.org/podcasts, or by looking up the Michigan Medicine Podcast Network wherever you stream your podcasts.