Episode 15: Building the World’s Best Patient Guide to Depression: The Story of the CHOICE-D Guide
Released: July 20, 2026
Podcast Transcript
Andrew: Hello everyone. Welcome to the CHOICE-D Patient and Family Guide to Depression Treatment podcast. My name is Andrew Kcomt and I will be your host for today’s podcast. I’m the Knowledge Translation and Research Manager at Hope+Me (the Mood Disorders Association of Ontario) and co-chair of the CAN-BIND Community Advisory Committee, also known as the CAC.
As a community mental health organization, we’ve served for over 40 years across the province of Ontario with a long history in advocacy and in the provision of many different types of interventions, including peer counselling, family support, clinical counselling, and recovery programs. In 2017, the Canadian Biomarker Integration Network in Depression, also known as CAN-BIND, and the Mood Disorders Association of Ontario, identified a need to create a plain language depression treatment guide, based on the experience of those living with depression and their caregivers. As a result of this, Hope+Me made a national call across Canada inviting those individuals to join the writing committee. In response to this, a knowledge translation project was initiated to adapt the CANMAT clinical guidelines into an accessible plain language version that incorporates the expertise of individuals living with depression.
Why is this a very important project? To quote one of our writers from this project, “creating this resource will help empower individuals to understand that they are not alone and allowed to reach out to others for help and it will be a valuable step in the direction of empowered patient-centred care and treatment.” We decided to name this resource the CHOICE-D Guide (the CANMAT Health Options for Integrated Care, Empowerment in Depression). This patient and family guide to depression treatment was written by patients and families with lived experience to enhance patient-centred care, which was actually recognized by the Paula Goering Collaborative Research and Knowledge Translation Award.
In 2023, CANMAT updated the clinical guidelines for major depression disorder. As a result of this, we have recently updated a version of the CHOICE-D Guide, thanks to our wonderful CAN-BIND Community Advisory Committee. So for today’s podcast, we’ll be joined by Dr. Jordan Antflick at the Ontario Brain Institute and one of our CAC members, Rachel Pieris.
Andrew: Rachel has been a Community Advisory Committee for CAN-BIND for 2.5 years and she has recently stepped into the role of data advisory committee member for the Ontario Brain Institute and person with lived experience working group member for the UHN. Rachel is also a research coordinator at U of T and outside of her working hours, she enjoys reading, craft making, music, (which I’m also a big fan of), watching movies (also love movies and TV shows), hiking (I’m not the best hiker), and long drives. So thanks so much for joining us today and welcome Rachel.
Rachel: Thanks so much for having me. Thanks, Andrew.
Andrew: First, how are people with lived experience involved in shaping the CHOICE-D Guide, and how did your own lived experience influence your recommendations?
Rachel: Just going back into my memory, people with lived experience on the CAN-BIND Community Advisory Committee were sent the CHOICE-D Guide and given some time to review it and that’s what I had done. And we met over the course of two meetings with each other and had the opportunity to provide our feedback on the guide page by page, and that was really nice because you could jump in, bounce your ideas off of each other. So that was what happened as well, and I remember giving some feedback just separately by email and that was a good experience.
The second part of the question here, which made me think a little bit more personally what my own lived experiences and how that influenced my recommendations. I think I put myself in the perspective of a younger Rachel, who maybe was starting out trying to grapple with the idea of… there may be something here mental health wise that needs addressing… and not understanding… being afraid to know where to look and then not knowing how to get help or if I knew how, I was a little bit afraid. And what would have been really helpful for me… and I just thought the guide filled in that gap for me years ago, and that’s the perspective I used when I reviewed the guide.
I also thought about my own community. My parents are immigrants. Many of us are in Toronto, have parents that are immigrants or immigrants themselves, and they come from a community where mental health is still very stigmatized. So it was important to have a lot of destigmatizing language in the guide and I was so thrilled to see that in there. And I have some lived experience as a researcher in disability and gender-based health, and that has helped me a lot with thinking about inclusivity in language. So that was something that I prioritized when I reviewed the CHOICE-D Guide.
Andrew: So thanks so much for sharing your lived experience, and I can actually relate. Our family were immigrants as well, and you know you didn’t really talk about mental health, so that was really important for us to open up that discussion. And thanks so much for sharing a little bit about your journey. Can you maybe share an example of feedback from people with lived experience that you thought had a meaningful impact on the guide?
Rachel: I remember, maybe not specific feedback from other members on the community advisory committee, but I’ll speak for myself. As I was perusing the document, I had come across a section on destigmatizing depression, and how it can come from anywhere and anyone can experience it. And there were some words about the types of groups of people that can experience and can be vulnerable to depression. And so I had sort of commented on using some inclusive language there and I didn’t know at the time, but I know now that it had a little bit of a meaningful impact because it was something all of us were feeling and had voiced on the committee. So I was really pleased to see that we all felt strongly about, I think being inclusive and just doubling down on the fact that the CHOICE-D Guide is for everyone.
Andrew: So Rachel, why do you think it’s important to include the perspectives of individuals… and family members, caregivers… living with depression in a resource like the CHOICE-D Guide?
Rachel: There is that saying… it’s become a bit of a slogan for research that is engaged with lived experience experts, and it’s “nothing for us without us”. I really believe in the meaning behind that… “nothing for us without us”. It’s something that I try to think about every time I step into a role like this. I’m aware of how research historically has been, and healthcare, a little bit dehumanizing sometimes to marginalized communities and a bit exclusive in terms of who gets recruited into research and who is seen and who is not. And oftentimes, when I think about just the community that I represent, I feel strongly that it is changing and it should continue to change. We’re shifting towards a more human-based, empathetic, meaningful, type of research and that should be the standard. I think I want to be a part of that, so it’s important for me to think about including perspectives of people with lived experience in a resource that will be for these people. Also, while doing this, I’m one person and the perspective that I offer may represent perspectives of people living with depression, major depressive disorder, whatever it may be… but there’s so much nuance within that community, and so I recognize that. I’m not a voice for everyone in this community, but I hope I’ve helped to shine a little bit of light and offer that perspective to a much needed resource.
Andrew: Thanks for that, Rachel. It was really nice to hear how you felt that perspectives of individuals. It’s great that we have a diverse community advisory committee, it’s very interesting to hear all the different perspectives so that we can integrate it into a great product like the CHOICE-D Guide. What was it like to see your perspective reflected in a resource intended for wider community use?
Rachel: I would say it feels a little surreal. Having lived experience of mental health struggles, it’s not something that I grew up being open about. I think so many people can relate to that. And it was for a lot of reasons, many of which stem from internalized stigma, which I do have my own struggles with today on and off. So yeah, so it does feel surreal. Again, I want to step back and think about maybe, however many decades ago… (A) a resource like this may not have even been around, and (B) if it had been, it probably wouldn’t have included voices like mine or perspectives like mine, and I find that so powerful. So that sort of adds to the feeling of it being surreal. And again, it’s just my perspective. There are a lot of nuances within the community, but I try to also tell myself, this is a good thing. This should be and is the standard. This development of resources, valuable tools like this that will be used by patients, communities, loved ones, clinicians, and so it should have their perspectives baked in there. I think that’s how I feel about it. The surrealism and also feeling grounded as if, yes, this is a good thing. This is a standard.
Andrew: Thanks for that, Rachel. So I think our CAC members gave some really great feedback in terms of… I know it can be very scary to go to a doctor’s appointment. It might be easier going to see your doctor for when you’re having headaches or migraine, but it can be pretty anxiety provoking when you’re actually seeing a family doctor about mental health challenges. So how do you see this guide supporting conversations between patients, people living with depression, caregivers, families, in partnership with their clinicians.
Rachel: I like what you said in the beginning there, Andrew, because it’s so true. It isn’t easy. It’s not easy, I think. It wasn’t for me. Having conversations about mental health with service providers and then eventually with, I think loved ones. I do feel like the experience I had could have been helped with something like this… this tool. As I feel there was a gap in my experience. I can see this guide helping patients to, I guess learn, be educated a little bit more on what it is they’re going through and that provides a lot of empowerment. And that can help, I think, combat that anxiety. But I think it also gives loved ones a sense of… I think they feel equipped and confident in helping and supporting whoever’s experiencing depression or going through their mental health struggles. I’m putting myself in the perspective of people around me who have sort of been there for me through thick and thin. I would imagine there’s feelings of helplessness there and you can I think be in the dark. And so I can see this guide offering a little bit of light here and supporting loved ones.
I also think about speaking to clinicians and appointments can be so daunting. Even still for me, I would say I’m a relatively empowered person, but I don’t know, it’s one of those things that’s really tricky to navigate. And as I was flipping through the CHOICE-D Guide, I was really pleased to see sections on… this is what you can do to prepare for an appointment, and this is what you could bring. Maybe bring a list of the medications that you’re taking or jot down some of the symptoms that you’re feeling, you can track them over time. These are things I think that would help you feel like you have agency when you enter an appointment and you’re not so helpless. And maybe that was what I felt. So I can see this resource filling that gap in and maybe even from… I’m just guessing… a clinician’s maybe using the guide to flip through pages and highlight things for patients and pointing out resources and encouraging things like writing down your symptoms here and getting used to self-management. Yeah, I’m droning on and on here, but I can see this being, in short, a very, very practical tool for all parties involved.
Andrew: Those were great examples, Rachel. Thanks so much for that. So I guess in terms of my final question, what do you think the guide will do for the broader community affected by depression, and do you have any final words that you want to share with the audience?
Rachel: Well, I think the impact is a positive one. I think the guide will have a destigmatizing impact on the broader community. There’s this really wonderful page, it’s near the beginning of the guide, and I remember that it talks about how depression can impact anyone from anywhere. There is really no discrimination in that. Of course, there are risk factors, but yeah, it can come from anywhere and I really liked that destigmatizing language. It sets the stage so well. It really does help to tackle shame, so I can see that it would have a destigmatizing impact on the broader community. Imagine you’re from a community where this stuff is not talked about, and your doctor gives you this tool. And you’re kind of ashamed, you hide it in your bag, you don’t want people in your friends circle or your family or community to see it, and then you open it up and one of the first few pages is, ‘it’s okay, like it happens to many people’. So I think that’s really powerful. I also think it provides such a good education. For the amount of information it provides… so many different treatments and beyond that, I love that there are pros and cons for the treatments that are offered. Because that, I think, gives people choices. It encourages people to make active decisions with their care teams. Early on, I felt as if I didn’t have a voice. Whatever maybe a clinician told me to do, I would do it. But a resource like this helps me with thinking about… well, there are some other options and there are pros and cons to both, and I would love to in an appointment speak about these things and be an active member in the decision making process for my own care. So I guess it supports a lot of agency and autonomy. And I think that’s important for someone going through the throes of depression for very obvious reasons. In general, it just supports long lasting recovery and wellness. There’s a lot of talk about, let’s say it’s medication… it may take a little bit of time, you may not have the right medication or the right combination in the beginning. And that’s okay, and maybe something like talk therapy works a little bit better for you. Maybe a combination of the two. Maybe you feel better for a little bit and then you relapse and I can see the guide being a long-term tool you keep in your quote unquote back pocket to support your wellness over time. It’s a journey.
Andrew: Thank you so much, Rachel. It was great that you took the time to share your own personal experience and your integral part of the CHOICE-D project. So we’re very grateful for that. Thank you very much.
Andrew: Next up, I’d like to welcome Dr. Jordan Anflick, who is the head of the Integrated Discovery at the Ontario Brain Institute, a globally recognized not-for-profit organization dedicated to advancing brain research, commercialization, and care.
In his role, Jordan provides strategic leadership across the organization, guiding the development and implementation of initiatives that align with OBI‘s mission to improve brain health and drive economic growth. Jordan also oversees the integrated discovery portfolio, ensuring the enhancement and standardization of research program service delivery, public, patient, and community engagement, as well as the monitoring, evaluation, and accountability of the key initiatives. Jordan also earned an honours BSc in pharmacology from the University of Alberta and a PhD in pharmaceutical sciences from the Leslie Dan Faculty of Pharmacy at the University of Toronto, where he also completed the collaborative program in neuroscience with a focus on cerebellar neurochemistry. His research contributions span neuroscience, patient engagement, knowledge translation, and health promotion. Jordan leverages this multidisciplinary expertise to bridge the gap between research and real-world impact. He is also very committed to making scientific knowledge accessible and relevant, and he works to translate research for diverse audiences within and beyond the scientific community. In addition, Jordan also has many interests, including cycling and volleyball, and also plays and coaches his kids’ hockey teams, and also is a diehard Oilers fan. So a big welcome to Jordan and thanks so much for joining us today.
Jordan: Thank you, Andrew. And I just learned that you and I graduated from the same department. I hope that if I was ever your TA for biochemistry, that I was generous with how I marked you as a pharmacy student.
Andrew: Haha, thanks so much, Jordan.
Jordan: All right. Happy to be here, Andrew.
Andrew: So let’s first start off with telling our audience about the Ontario Brain Institute, also known as OBI, and why engaging people with experience is such an important part of its mission and places such a strong emphasis on empowering patients and families through access to knowledge.
Jordan: The Ontario Brain Institute has a long-ish history, not nearly as long as Hope+Me. We were created in about 2010. At the time, we were created by Joe Rotman, who is a noted philanthropist and investor, and he also had a real idea of how we could do research with more impact. He saw Canada’s role on the international stage and wanted to elevate it. He worked with Don Stuss, who is the founding president and scientific director of the Ontario Brain Institute and they really wanted to create a new model for brain research. Every area of research is different, but brain research itself has its unique challenges given that the brain itself is so personal and they saw what the future was going to look like with the rising tide of aging population, the prevalence and understanding of different brain disorders. So they brought together a group, the commissioned report, and it was forward-looking, and it asked three questions, really: If not brain, then what? If not Ontario, then where? And if not now, then when?
And that report launched the Ontario Brain Institute, which kind of had a different idea of how to do brain research. And really, it was founded on some principles that make it unique from other funding organizations. One, that we’re going to do it in a very integrated way. We have so many different groups of people, not just within science, but across different sectors… the private sector, data scientists, psychiatrists, neurologists, psychologists, patient community… really want to bring everyone together. We’re all asking very similar questions, and I think that we could do this better if we did it together. We’re going to build it on questions that are more relevant to the people involved instead of just fueling the intellectual curiosity of researchers and clinicians.
So if you want just a simple answer, we’re a funder. We want to build an ecosystem that’s focused on brain health and we do this by making strategic investments that support and connect research, commercialization and care in a continuum that really helps to bring lab to life. And it’s needed because we know that brain disorders affect 1 in 3 people. That’s just people who have a clinician identified diagnosis. If you really think about it, each of those people has family, friends, co-workers… so you really need to magnify or amplify that total impact by 4 or 5, which really means every single person you know is affected by a brain disorder. We’re investing in research that helps us better understand the biology of these disorders so we can develop better diagnosis and treatment tools. We also invest in companies that are going to help to bring these tools into the real world. And we also partner with patients along the way to make sure that the investments that we’re making, the questions that we’re asking, really drive the research and the commercialization efforts to make sure they’re addressing questions that really, really matter to the people with the lived experience.
Andrew: Thanks so much for that wonderful overview, Jordan. You know, we’ve partnered for so many years now, and I really like your model of integrating all those different stakeholders. And especially, I’ve worked with other research organizations before, but OBI, specifically, is very great at integrating the voice of people living with different brain disorders. And it’s always been a real privilege working with you all these years. So thanks so much for that.
Jordan: Likewise.
Andrew: So in my next question, I’m going to ask, how is OBI involved with CAN-BIND and any community organizations like Hope+Me? And how does that partnership function in practice? And specifically, how did this collaboration work in the context of the CHOICE-D Guide?
Jordan: So it’s very complicated, but let’s try to simplify it. And maybe it’s just complicated because we’re close to it and we have a long history. But the simplest way to think about OBI is a funder. So we provide funding for really impactful and potentially impactful projects, whether that’s coming from a research network or whether that’s coming from a community organization.
So we fund CAN-BIND as one of our five integrated discovery programs. These are province-wide programs that fund research, data collection, commercialization, and patient engagement knowledge translation across brain disorders. One of the key things is that these programs are steered by people with lived experience, in this case, your community advisory committee that is a tremendous engine that drives the questions and the quality of the research that comes out of the program. And part of that lived experience also involves community organizations. We see groups like yours, Hope+Me, as a really, really critical bridge between the real world and the research world. What you’ve been able to do, in your role as the co-chair is to be able to make sure that the lived experience is guiding the work of the program, the types of questions they’re asking, how they’re designing studies, strategies for recruitment and retention, but also acting as a bridge to get all of that important evidence that’s coming out of CAN-BIND back into the real world, whether this is through things like public talks or newsletters or really impactful tools like the CHOICE-D guideline that actually aims to sort of democratize the research evidence and present it in a way that’s not just accessible but relevant and relatable to the lived experience. And like you said off the top, this tool allows people who are living with depression to be able to come into their doctor’s office with the same level of knowledge that their clinicians, so they can have a more peer-based conversation to decide which approach is best for those people.
I actually believe that Dr. Parikh, Sagar Parikh, was the one who brought this idea to us, and sometimes good ideas just align perfectly. As he brought this idea to us, we were thinking, what can we do with the evidence? How do we take this a step further? And the CHOICE-D was one of those prime examples that emerged from the research program. So I think our role was, most of the work was done that leveraged the longstanding partnership between CAN-BIND and Hope+Me, your ability to work with people with lived experience and that shared interest in creating something that would be so valuable for the community to help people that are going through their own journeys with depression.
Andrew: Thanks so much for that wonderful overview. Especially, I think it’s very important to collaborate with different stakeholders because that’s so crucial in terms of making these things very meaningful for people living with different brain disorders. From OBI’s perspective, what makes the CHOICE-D Guide especially meaningful, and how does it contribute to advancing brain health more broadly?
Jordan: We have like a very basic model for KT. We think about it as three P’s. And when you’re thinking about the P’s, you’re really thinking about your audience. The first is people. The next is practice, which includes both clinical practice and also practice within the community. And policy. And I think the majority of KT is focused on the first P, with people. How do you inform people? How do you empower them with knowledge? How do you use that knowledge to get them to change their behaviour? And I think the CHOICE-D guideline definitely does that. It raises awareness. It gives people knowledge, empowers them with knowledge to have more agency and also gives them a synthesis of the evidence which allows them to make their own decisions about their care and have those informed discussions with their clinicians as opposed to going into it with less information.
I think that what the CHOICE-D guideline also does really well is on the practice side. We have the CANMAT guidelines and the CHOICE-D guidelines provide another layer of evidence to that. But I think it’s also done a lot of really great things for your organization, Andrew, with Hope+Me… to be able to have more conversations and create tools. And like you’ve translated this, I don’t know into how many different languages and how many downloads, but I think this is probably one of the most successful KT products I’ve ever seen in my life. And by that, it’s also changing the way that you guys, as a community organization, are able to continue to provide better support and give better knowledge to people that are reaching out to you for help outside of the clinical care sector, but within the community sector looking for support with mental health.
And then in policy, this is the hardest one to change, but I really do believe that the CHOICE-D guideline has tremendous potential to change the way we think about depression, fund the way the care is provided.
Andrew: Yes, it’s truly amazing how, you know, from OBI’s perspective, you were able to kind of make this meaningful for so many different stakeholders from the community perspective, but also from the clinician’s perspective. And it definitely helps to empower people living with brain disorders and also family members and their caregivers.
Jordan, I want to ask you how the partnership with CAN-BIND and community organizations has made an impact through initiatives like CHOICE-D Guide. In addition, I also wanted the audience to learn about your recently published and open access book, A New Blueprint for Brain Health, and how community-led evaluations will construct a healthier future.
Jordan: This is an amazing question, Andrew. Partnership is part of OBI’s mantra. There’s the old adage, right… “If you want to go fast, go alone. If you want to go far, you go together”. And I think this is an example of going far together, although I say we are doing it much more quickly than we would be alone.
Within the research world, the incentives are to publish papers, to get grants on top of all of the other things that clinicians, scientists and researchers have to do, like supervise students and teach and do service to the university. So there’s a lot of opportunity that exists to translate knowledge, to get that out of the academic sector. And there’s groups like you guys, community organizations that are tremendously incentivized to do this because you’re in the real world, you’re engaging firsthand with people who come through your doors, call your warm lines, reach out to you. And the more knowledge that you have to provide to those individuals, the better that evidence spreads and the better care and support that’s able to be provided for people. So I think community organizations play a tremendous… tremendous and perhaps unsung role within the care ecosystem. So it’s not an either/or… it’s what can we do together, and the partnership between CAN-BIND and Hope+Me is a really strong example of that way that knowledge can move back and forth between research and the real world.
This is one example of that type of partnership with community organizations and this lets us see what we believe is the really under-appreciated but tremendously important role that community organizations play in health, especially chronic disease and especially in the brain health space. You talked in your intro about what Hope+Me is able to provide. I’m not sure a lot of people realize how much care the community organizations provide for people outside of the healthcare system. And these are either things that the healthcare system is unable to do or can’t do. Community organizations can play a tremendous role next to the health care system just based on where they’re situated, providing peer support for individuals, helping individuals navigate a system provide education and skills building for people, and that’s one of the things the CHOICE-D guideline is able to do. And also interventions, whether this is light touch interventions or things like peer-based CBT.
So seeing how much of an important role the community organizations played, we decided, we looked at the amount of funding that was going to it and how we can change those incentives and better integrate the role of community organizations. We created a program called the Growing Expertise and Knowledge Translation Evaluation Program that provides both funding for programs to scale and spread their programs, but also funding for evaluation so that community organizations become more familiar with the research process, learn how to learn from their program and improve their programs through quality improvement but importantly that funding allows them to actually carve that out and focus on it instead of the evaluation aspect being an afterthought.
So we’ve been at the GEEK Program for, now, about 8 years. We funded 20 community organizations. These have supported over 5000 individuals. We’ve invested about $3 million in community organizations who’ve then taken this evidence that they’ve generated through the GEEK Program, been able to get an additional $6.5 million of follow-on funding to continue to support people in the community.
Now we’re at a position where there’s a real opportunity to better link clinical research with community organizations either to adapt something that works clinically in the real world (and the CHOICE-D guidelines are an amazing example of how we do that), but also how we can ensure that community organizations are working side by side and in the care journey so that you have referrals going back and forth. Sometimes people’s first interaction when they need help is with a community organization. So what we’re trying to do with this book is both elevate the role that community organizations play, position them within an ecosystem of evidence as opposed to a hierarchy of evidence. We’re trying to say communities play an important role. They are generating evidence. It can be potentially clinically meaningful to make sure that people can be supported, not just in healthcare, but in that integration between healthcare and community care in their health journey.
Andrew: I just had another question. You mentioned about the GEEK Program, and that’s been really great for so many community organizations. Is that still happening? And can you give us a quick overview of how people can apply for it?
Jordan: Yes, every summer we do an open call for GEEK organizations. These are any group that’s related to brain health. And that’s a very broad term. Come check out our website, braininstitute.ca/geek. We’ll probably be doing an open call in July, and it’s a two-phase application. The first phase is to gauge interest and it’s a very short letter of intent. Once you’ve passed that phase, then we pair the community organization with an evaluator to start that evaluation capacity building. So you’ll learn about a logic model, how to develop a theory of change, and that helps develop your full application. We tend to fund 3-4 groups every single year, and these programs usually last about 2 years.
That’s not where our journey ends. Like I said, our hope is that GEEK becomes a good feeder for how we can create partners for the knowledge that’s coming out of our research programs, and OBI is looking to figure out ways that we can fund that so that these groups that now know how to do research can help adapt and implement research that’s coming out of our clinical research networks into the real world setting. So check it out. It’s an amazing program. We do a whole bunch of case studies in the Blueprint for Brain Health book, so you can get an understanding of what those typical programs look like, as well as some really important testimonials from people who’ve been part of the program and also participants in the program, but also the people who’ve run the program. Yeah. So that’s the braininstitute.ca/geek.
Andrew: Thanks so much for that, Jordan. I think our listeners will definitely, will definitely, be interested in finding out more about the GEEK Program and actually reading that wonderful open access Blueprint for Brain Health.
So I just wanted to say a sincere thank you for Jordan. We partnered with him for many, many years and he provided a wonderful overview and you definitely should show your dedication to advancing brain research and care. So thanks so much for joining us today.
Jordan: Thanks for having me, Andrew, and I look forward to our continued partnership.
The CAN-BIND Podcast is produced by the CAN-BIND Knowledge Translation (KT) & Outreach Platform, co-led by Dr. Sagar Parikh and Dr. Fabiano Gomes and managed by Dr. Nirushi Kuhathasan. This episode was hosted by Andrew Kcomt (Hope+Me) and featured Rachel Grace Peiris (CAN-BIND Community Advisory Committee) and Dr. Jordan Antflick (Ontario Brain Institute), with additional support from the broader KT team.