The Power Of YOUR Mental Health Experiences (with Frayme)

You, just as you are, can positively transform the youth mental health space. Here's how. Today we'll talk about the importance of live and living expertise for system change. I'm Monica and I'm a neuroscience graduate and also a youth groundbreaker, which you'll get to hear more about later. And today I'm joined by Shauna and Travis from FRAME to discuss the value of your lived and living expertise. Welcome both. Thank you so much for having us. Thank you so much for your time to be here and to really talk to us about lived and living expertise. And so to begin, let's just dive right in and start off with, would you like to tell us a bit more about FRAME and what you really think about living and lived expertise? Sure. I'm happy to start us off, Monica, and hello to everybody. Thanks for having us. So FRAME is really a backbone organization across the Canadian youth mental health and substance use system. We're in the business of knowledge. So what that means is that we really want to make sure that the best services and programs and solutions for young people and their families and their communities are being shared and that others know what they are and how to use them and how to maybe apply them in their context. So a lot of what we do is about connecting people, building relationships, and making sure that we have timely solutions to the problems that are impacting young people and their families in real time today. One of the things that we're really trying to do at FRAME is we're trying to push forward this concept of knowledge mobilization or sharing knowledge in that way so that we're thinking more about knowledge equity. And what we mean by that is that we're really valuing the experiences of young people who have struggled with mental illness or substance use challenges and we're integrating their experience into the conversations, into the policy that's building the system and the way that it works. It's actually building the programs and the solutions. So when we talk about lived expertise, we really mean lived experience. But I think we're going to talk a little bit more about why talking about it as expertise is very important for the time that we're in right now and what we're trying to achieve. But it's really that. It's the experience you hold as an individual that has value to help us make better solutions. Yeah, maybe I'll just jump in and say that a lot of what we do as an organization involves what's called knowledge mobilization. You might have heard this called the knowledge translation or knowledge transfer. But really it's all about the so what and now what, right? We know that in this sector a lot of research gets done and the findings come out. And so it's sort of our job to say so what and now what, right? What can we do with that knowledge? How can we put it into practice to help people? And I think Psych2Go is a great example of knowledge mobilization and translation, right? They take these amazing research findings and translate them so that you can understand them, right? And so that it can be shared and put into practice. So that's a lot of what we do at Frame. So you're speaking about knowledge mobilization. I think the really key concept that you highlighted very well is how do we then integrate this living experience or what people say living expertise into knowledge translation. And I say this kind of lived expertise, kind of lived experience interchangeably, but aren't they interchangeable or does it actually differ? Yeah, I mean I think that the terms are used interchangeably. Part of the reason that we talk about lived expertise as a part of experience as opposed to just experience is we're really trying to push and change the rhetoric around that, right? I think lived experience is expertise and we should value that expertise just as much as any other expertise. And that includes, you know, providing people say with honorarium and compensation when they talk about their lived expertise and share that knowledge because just like you'd value any other expertise. And so that's sort of why we prefer that term. There are different terms used across the world. I think in the UK, for example, they use the term experts by experience or expertise through experience or experience experts, which I really like as well, but that's really why we focus on that. And so Frame, the way that we work in everything that we do is we try to triangulate evidence, right? And so there's three sides to that triangle. The first one being sort of the research and the evidence and the academics. What does that say? The other side of the triangle is at the service provision level. So what are service providers doing? What are they doing? You know, what are they doing in treatment? How do they conceptualize the evidence? How's it being put into practice? But then the third, and arguably I'd say the most important part of that triangle is what are people saying with lived and living expertise and how can we further amplify their voices and capture and use that knowledge? Yeah, one thing I might add as well is that part of what we think about when we talk about lived expertise is the social justice movement behind including people who access services within the designing of that service. And to Travis's point, really trying to create an understanding of the validity of that as something that needs to be integrated into how we think about what we're going to do. And so part of the push, language is important, and we know this. Part of the push to decolonize our systems of health service and to also create more accessible anti-racist systems of service within youth mental health and substance use is to integrate the experiences of those who have access services or who are trying to access services or maybe who haven't accessed services because they haven't worked for them. And so this language piece is really important. We're talking about expertise because we're also trying to break down these systems of hierarchy and dismantle them so that we're all coming together to inform what we want our systems to look like and fundamentally our world to look like. So we're really touching upon the importance here of being able to include the voices of those who have access services or who have not access services for whatever reasons, for whatever barriers. And I'm just curious as if you can go into some of the research that point to the importance and the impact of including these voices. Yeah, so I mean, I think this gets intertwined with a concept called epistemicide. And epistemicide is really the sort of destroying or devaluing of different knowledge systems. And I would argue that, you know, in the world that we live in today, we have sort of devalued cultural knowledge, traditional knowledge, but also the knowledge from lived and living expertise. And so when we look at the research and we say, you know, who's doing great work at really valuing those voices and incorporating those voices into, say, service design or program delivery, we find that by having those voices at the table, by including them in a very meaningful way, engaging them meaningfully, that you produce higher quality research, more relevant outcomes with practical impact, you increase the likelihood that, you know, the products or treatments that come from it will be accepted. And then you increase research, trust in research and those organizations as well. Also, though, it's sort of a two way, it's a mutually beneficial process. So those people that also get to share their experiences and get to share their knowledge, they get increased empowerment, they get hope, they get increased capacity, oftentimes they get increased training, and oftentimes they also get provided honorarium for sharing their knowledge too. And do you have any thoughts on what might some of that involvement look like? Because I've personally been involved in FRAME's, like, very own initiatives, but I would love it to hear perhaps how other people might be able to get involved as well. Sure. So there's lots of ways that we can get involved and folks can get involved. So, Travis, I can start and then maybe you can jump in because I'm sure there's pieces that I'll miss. But I think there's things within FRAME, but then there's also things within the system more broadly or with our partner organizations that we're really seeing. We're seeing a shift that folks are starting to understand that they have to work in a different way. Researchers, policy workers, service providers, there's more of an acknowledgement now than there ever was previously in the mental health and substance use system that we need to integrate the voices of youth and their families. So, with FRAME, we have a network called Groundbreakers. So, Groundbreakers is a network of over 300 lived experts from across the country, and we really try to work with Groundbreakers from across the country with different levels of experience and expertise, different identities, to help them find opportunities where they can leverage their lived experience and they can really feel like it's being implemented in a meaningful way. So, sometimes that looks like working with researchers who are working on a grant where we want to make sure that it's actually informed by lived experience. Sometimes that means working on policy recommendations in partnership with service providers or policy developers. Sometimes that means supporting service providers when they're trying to improve a program. And one of the things that we really want to try to achieve with Groundbreakers is that deconstruction of hierarchy and value around different types of experience. So, it's actually a facilitated process that FRAME supports where we match young people and caregivers with these opportunities and vice versa so that we're actually informing all of the different types of efforts we're making to make things better with the perspectives of everybody and the experience of everybody. So, Groundbreakers is open to anyone to join, so definitely folks can feel free to check it out. You can find it easily on our website, and we have at this point over 300 people that are part of Groundbreakers, making it the program that it is. Monica, you worked with us on Groundbreakers before, so that's one of the ways that we're really trying to create a movement of lived experts and articulating it as such because what we say when we're bringing, we're kind of like working with folks that join Groundbreakers is that it's not only your lived expertise that brings value to the work, but a lot of Groundbreakers and a lot of young people across this country hold lots of different forms of expertise that can be valuable in addition to their lived expertise. So, part of it is also about investing in leaders of the future. How do we make sure that we're helping young people achieve their own goals in the work that they're doing and leveraging their lived expertise to achieve that, but not only sort of focusing on their lived expertise as the most critical piece they bring to the table? Yeah, I just wanted to add on as well because you mentioned Groundbreakers, and as a Groundbreaker, I think it's just been an absolutely amazing experience. Just as an example, one of many things I've been involved with was the grant adjudication, LTL grant, and just to see how I got to incorporate my own experiences, like navigating the system, getting to interact with youth on the Psych2Go platform, and then seeing how that could be translated into research that ultimately forms the basis of policies and kind of changes that we'll see has just been incredible, and it's really a process where I got to work with a bunch of different people with different experiences as well. So that's just one of the many things that I really, really enjoyed, and I also just wanted to mention too, I think this streaming of itself, which is a part of the Ask an Expert and Ask an Advocate stream, really encourages you as listeners, as watchers, to share your experiences. So if any of you watching would like to come on and share your experiences about, I don't know, going through the mental health kind of system, because sometimes it can be very, very difficult, then, you know, email me, because I always want to find ways to get youth involved with advocacy and creating healthier spaces. So that's my little personal note of that, and if there's anything else you'd like to add, Travis? Just to say too that, you know, sharing your lived and living expertise, it can be difficult, right, and not everybody's at the point where they can openly share that or is willing to, and so one of the things that we do at Frame, and one of the things that's really important to us, is to have sort of varying degrees of engagement, right, so you don't have to, you know, there's this idea of a ladder or a traffic light system where there's inappropriate types of engagement, and those are like tokenistic types of engagement, where maybe an organization will have a young person come on as the token youth, and they say a few lines, but then nothing really happens with that knowledge, you know, they're not really meaningfully engaged, and we strive for meaningful engagement in all we do, and so sometimes we're just looking to inform or consult young people, and there's meaningful ways to do that, and sometimes us, ourselves, Frame, or our partners are looking to go all the way, right, to have youth sort of co-lead in true partnership, creation of knowledge products, or harnessing their knowledge, and so when you do sign up for Groundbreakers, if you do, hopefully you do, you'll see a whole range of opportunities, right, for you to engage with, you know, and so whatever you're most comfortable with, we encourage you to do so, because we love hearing, we love hearing your lived and living expertise, and we can do the great work that we do in system transformation without your voices, so yeah. Yeah, I just wanted to also add that, yeah, meaningful engagement could look so different for everyone, because for one person, being meaningfully engaged would mean being informed of oneself, of, you know, what the system looks like, how to actually access services, whereas for someone else, it might be actually sharing their personal experiences, so I think that's a really important thing to highlight, and one thing that I found very valuable through working with Frame, through working with Psych2Go, and just through my studies, that truly meaning is different for everyone, and all of them, all different forms are valid. I think a really nice piece, like, around engagement and what's really important is that, this kind of sentiment that clarity is kindness, right, so whatever way you can engage as an organization or as a group of people, and whatever the scope of that work is, being clear about that up front with young people that you're working with is really important. I think, Monica, to your point, people have, when people have different expectations coming into something, and those aren't clarified from the beginning, it can really start to feel like a tokenistic experience, or one that isn't lining up with what you expected or what you had hoped for, and to Travis's earlier point around what is the value of being engaged, and these sentiments of, you know, feeling hopeful, feeling empowered, and feeling like you're creating impact, we're going to erode that if we don't have that clarity and that agreement, that shared agreement from the very beginning. So we really talked about the forms of sharing lived experience, lived expertise, and then we talked about the importance of doing so, so if people are watching now and really are asking what's the next step, how can I, myself, capitalize on sharing my lived expertise, what would you say to them? I think there's a few things for folks to consider too, because one of the, I think one of the really important reflections that we've heard from a lot of youth experts, yourself included, Monica, is that an individual's experience doesn't equate to an entire community of young people's experiences. Youth aren't homogenous, youth have really different experiences, even if they have a shared diagnosis or they have a shared experience in a system, and so I think one of the things that's really important in terms of getting involved is really thinking about what's the piece of your lived experience that you feel willing to share, safe to share, prepared to share, and in what ways, and what are you hoping to achieve by sharing it? And I think another thing that's really important for us to think about, you know, and I have lived experience as well, and every time I think about sharing my own lived experience, you have the right and you should feel you have the permission to share it or to not, and in terms of the circles that you've been kind of brought into, and one of the things that I think we're really trying to think about in terms of engaging with lived experts is that, you know, sometimes we can put out a request and say, hey, we need some folks that have this type of lived experience to help us build something better, and it's up to that person to self-identify, and then we don't really have a right to continue to ask them to bring that lived experience every time we're working with them in that capacity. We know that they have that lived experience, and it's informing the work that they do, and so I don't think that you have to lead with your lived experience every time in every situation, even if it's something that's being, that's informing that work or of value to that work, and feel empowered for that. You know, feel empowered to put boundaries around how and when you share your lived experience, and make sure it always feels safe. I think safety is an ongoing assessment piece for individuals, and it might have felt good to work with a group of people or an organization at one point in time, and then through the life of that work or over time, it doesn't feel good anymore, and that's okay as well, but there's definitely ways I think right now that folks can, if they, if they're feeling like those pieces are there for them, and they want to, they want to integrate their lived experience, there's definitely ways. So Travis, maybe I'll let you speak to that a little. Yeah, in terms of, you know, if you really want to use your voice and to help, to help shape the system into what you want it to be, you want to be the change that you want to see in the world, I think finding local grassroots organizations, right, mental health organizations can be a very powerful way for you to get your knowledge out there, but more than that too, I think there's a lot of power in storytelling, telling stories, and this doesn't have to be your personal story, right, it could be the story of experiences of others, but really telling a story helps people empathize with the situation, understand it, and it helps them remember it so that they can tell it to others as well, and so sharing your story in a safe way can be a very powerful way to get your knowledge and lived expertise out to the system, getting it shared, and getting it used. How does storytelling really look like, because I think, I guess for some people who might be sharing their stories for the first time, it's hard to know where to really start. Yeah, I think that's such a great and pertinent question, Monica, and I think even as you like, you're someone who's maybe shared your story for years, it's still something that kind of comes up, is how do I, how do I share my story, and how do I keep sharing it in a meaningful way, and I think there's a few things that I would recommend for folks that are maybe thinking about sharing their story, or they want to start sharing their story, and one is really about, about again, understanding purpose. What's your purpose in sharing your story, is like a first step, what do you, what change do you want to see by sharing it, and do you feel comfortable expressing that change to folks, so if you're coming in to an opportunity and sharing your lived experience, can you be clear about, I'm sharing my lived experience for this reason, this is what I want to see come out of it, because people's stories aren't really just there for consumption, right, and I think that's really important, is if you're sharing your lived experience, you have a right to expect that it's being shared with impact, and that you want to see that impact delivered, so we're holding, we're holding those that we're sharing our lived experience with accountable, you know, you're giving a gift, and it's a personal, it's a very personal gift to help make things better, so having expectations of how that looks, I think are reasonable, one of the ways that you might want to start, definitely like Travis spoke a lot about groundbreakers, which is a great way to get connected, not even just to FRAME, but to others, to understand what the sector looks like, Monica's here, she's offered for folks to reach out with I'd say look for your champions, look for the organizations and the individuals who are trying to create pathways for lived expertise to be integrated into the work and into the system, we're here to help, we want to help, we want to provide platforms for your voice to be heard, so definitely look for those champions, and ask, I think is another really important piece, and I think Monica, you're sharing some stuff, so that's great, providing specific avenues, but I think one, that's definitely one of the pieces that can be most effective, and also young people are a force across this country, in Canada and beyond, right, I know you have folks from from around the world as well, and I think that the networks you create together are some of the most powerful mechanisms for being included and finding out how you can really leverage your voice, and one of the other things, the kind of last thing I'd say about that is you don't have to leverage your voice in isolation, find your communities, find your networks, and band together to share collective stories, and to kind of demand collective action, so your voice doesn't have to be a sole voice, it can be a community voice. There's also, I want to add a really great resource on the FRAME website, we have this program called our fellowship, our knowledge mobilization fellowship program, and last year two of our fellows, so these are two groundbreakers that were sort of championed and created a knowledge product based on a need in the system, they created this document called the ask document, which I can share in a little bit later, and what the ask document is, it's a document for you to take with you in any engagement opportunity to ask the tough questions, right, of those that you're engaging with, to know am I being meaningfully engaged or am I being tokenistically engaged, right, because sometimes it might be hard to figure out like what questions to ask and what should my expectations be as a person with lived and living expertise being engaged with, and so this document is really a sort of reflective pamphlet for you to work through with those to try to tell you, you know, am I being meaningfully engaged or how could this be better, so that I'm sharing my story with purpose and that, you know, I'm making an impact through sharing my knowledge. Exactly, I think there's just, to what you said earlier, Sean and Travis, just so much power in collective action and finding a community that really resonates with you, just within the mental health space, there are folks who have perhaps experienced, I don't know, loss, who have experienced big changes in their life, and then within that sub-community, there's probably people who have experienced the exact same thing as you, to really speak to the point that you're not alone, and one great avenue is to really get involved with the Groundbreakers Network, I mentioned it earlier, but I'll leave a link in the description box as well. Other great communities, I know Kids Help Phone is also, they have a wonderful, wonderful resource where you can talk to counsellors, there's Childs Helpline International for those who are located internationally, we also have a Discord on Psych2Go, it's discord.gg.psych2go for people all around the world to really share their experiences, and if for those who are keen to come in person and located in Vancouver, there is the wonderful conference coming up, I will leave it to Shauna and Travis to tell you more about that, because I'll be present virtually though, and so will tons of other advocates and those passionate about youth mental health change. Thanks Monica, yeah, so next week we have our Learning Institute in Vancouver, BC, but we also have a virtual option, so we're doing a hybrid event, and really our Learning Institute highlights all of the incredible work that's happening across Canada and beyond in the youth mental health and substance use sector, and this year we're expecting a lot of youth advocates, so real leaders who have experience in sharing their lived expertise to create system transformation, so it's a great opportunity if folks are in the Vancouver area, as Monica said, or maybe interested in traveling for the conference, it's two days with a meet and greet pizza party the first night, if you want to come half a day early and join us, which will be all the youth groundbreakers having a bit of celebration before the event, but it's a good opportunity to really meet other young people who have experience advocating and using their lived expertise, so a great learning opportunity for those who are interested in potentially starting to share their story, and also a great connection opportunity for those that maybe have some experience doing that and want to meet with other youth advocates, so that's happening, you can find more information on our website, and the kind of theme this year that we're really focusing on is how do we build partnership and collaboration across the sector, so to Travis's very early point around triangulation of evidence and working with service providers and researchers, scientists, young people, their families and their communities, and cultural experts coming all together to really understand where have we seen success in that across this country and beyond, so that we can learn how to keep doing that and continue to do a better job at that. Yeah, I just want to add a little plug to that, that our final plenary session of the conference will be talking specifically about storytelling, and you might recognize some of the people at that plenary because Psych2Go will also be giving a final plenary, so that is wonderful and we're so glad to have Psych2Go being present, but if you join Groundbreakers, it's free to join Groundbreakers by the way, if you join Groundbreakers then you can sign up for the virtual conference for just $20 Canadian, so cheap for the Americans listening, but yes, and it'll be a great experience and we're also having a special networking session for virtual attendees as well, so I encourage everybody to sign up. Yes, and with that I'm so so grateful that both of you came to really share your expertise on how to get involved and what meaningful engagement really looks like, and I'm just really thankful for everything, so thank you so much, thank you so much Shauna, and yeah, thank you so much also the Psych2Goers for watching, I just wanted to, before I leave, to highlight that yeah, everyone here, I think you and I and yeah, truly everyone can bring so much lived expertise, just as you are, and should you choose to get involved in whatever capacity, there are resources there, we've listed a couple of them in the stream, so feel free to go back and watch them, Groundbreakers, the Learning Institute, searching online for your local organization, simply just sending out an email and seeing, you know, this is my experience, I'd love to help through XYZ, and just being proactive, and so that's all from me, thank you so much again, and if you have got any other comments or thoughts, you can leave in the comment section, and I will try to get back to you, thanks everyone, bye, thanks for having us on, thank you, bye.