A.1 Symposium:

Patient as a Person: lessons learned from ten years of a student-initiated program on active patient involvement in interprofessional education

Dante Mulder, Matthijs Bosveld, Marcel Verhoeven, Maastricht University, The Netherlands

Abstract: In 2015, an idea of two students to incorporate the patient’s voice in interprofessional education marked the beginning of a journey that led to the sustainable implementation of active patient involvement in undergraduate education at multiple educational institutions across the Netherlands. Ten years on, annually 1000 students from 13 study programs institutions are involved in small-scale interprofessional education, learning in collaboration with 260 involved experts by experience (EBEs). The supra-institutional, interprofessional organization is facilitated by the Patient as a Person Foundation – a non-profit organization led by students and EBEs that, additionally, actively organizes reciprocity for participating EBEs in collaboration with educational institutions.

In this symposium, key figures will share personal accounts of pivotal moments throughout their exciting but challenging journey, also discussing the scientific insights that have come to light along their journey. Attending patient leaders will reflect on their roles as EBE in educational programs as well as on their role in co-organizing the education. Accounts from the initiators, as well as students will provide attendees with ten practical lessons learned along the way – a lesson for each year since our journey started. Conclusively, the presenters will debate with attendees on how to co-organize interprofessional education actively involving EBEs together with students and staff from educational institutions in a sustainable and cost-effective way. Apart from practical lessons and insights, attendees’ passion for advancing patient involvement in interprofessional undergraduate health professions education will be nurtured – we promise attendees will leave inspired!

A.2 Symposium:

Claiming Agency: Expanding Roles and Deepening Patient Partner Engagement in Interprofessional Education

Elizabeth Cadavid, Bhavini Patel, Elizabeth Mohler, Janet Rodriguez, Centre for Advancing Collaborative Healthcare and Education, Toronto, Canada

Abstract: At the Centre for Advancing Collaborative Healthcare & Education (CACHE), patient, family, and caregiver partners are embedded throughout the University of Toronto’s Interprofessional Education (IPE) Curriculum—not as passive participants, but as co-educators, developers, facilitators, advisors, and leaders. Over time, this involvement has evolved through what we refer to as a “ladder of engagement”: a continuum that supports growth, broadens access to roles, and fosters meaningful collaboration.

This evolution raises critical questions: How do we support agency without replicating systems of hierarchy or exclusion? How do we ensure patient partners have the space, confidence, and support to shape the programs they are part of?

This symposium explores how CACHE’s approach to patient partnership creates opportunities for shared power, mutual accountability, and sustained engagement. Drawing on the experiences of both patient partners and program coordinators, we will examine intentional practices—such as structured onboarding, mentorship, co-creation of roles, and continuous consultation—that support engagement at all levels.

Rather than focusing on “professionalizing” patient partners, we centre on the idea of claiming agency—the capacity and opportunity for individuals to shape their roles, influence decisions, and contribute in ways that reflect their lived experience and values.

A.3 Workshop:

Partnering with Families: Enhancing Clinical Education Through Family Engagement

Catherine Diskin, Ashley Edwards, Kim Young, Caitlyn Hui, Hospital for Sick Kids, Toronto, Canada

Abstract: In today’s healthcare landscape, where patient-centered care is both a priority and a professional expectation, engaging families in clinical education is essential. Families are active participants, advocates, and caregivers who offer invaluable perspectives on illness, recovery, healthcare delivery, and the emotional and social dimensions of care. Led by clinical, including trainee and family facilitators with a strong background in family engagement and patient-centered education, this interactive workshop explores the vital role families play in shaping compassionate, patient-centered healthcare professionals.

The Complex Care Program at the Hospital for Sick Children provides care to over 700 children with medical complexity (CMC). Care of CMC is rooted in shared decision-making as a foundation to effective partnership between clinicians and families. Over the past five years, the Complex Care Program has developed expertise incorporating families and youth into our education program. This program spans career lifespan of healthcare professionals, including curriculum development, trainee assessment, and teaching delivery across various settings (small group and large lecture) on multiple topics including clinical skills and expert topics. Family leaders have participated as co-principal investigators on grants received to support research in education and co-authors in presented and published work, reflecting our growing experience in family partnership in education.

Drawing on years of hands-on experience, research, and collaboration with families and learners in education, the facilitators will share approaches to forming family partnerships in delivering education training and real-life examples illustrating lessons learned that participants could adapt to their own institutions.

A.4 Workshop:

I said yes…. now what?” The journey of becoming a patient partner in medical education

Dana Arafeh, Melanie Henry, Noor Ramji, Michelle Leppington, Liz Kazimowicz, Kishany Subramaniam, Atif Zia, University of Toronto, Canada

Abstract: There is a growing push to engage patient partners in medical education, and often the assumption is that patients are “ready” to engage the moment they are invited. Many patients are invited by faculty or learners without the clarity, preparation, or support needed to contribute meaningfully. At the same time, faculty and learners value patient partnerships; however, they are unsure how to collaborate effectively with patient partners or what roles they can or should play. Often, there is no feedback loop or mechanism for patient partners to understand the impact of their contributions, leaving them even more uncertain about the impact of their involvement.

This workshop explores the journey of becoming a patient partner in medical education. Drawing from real stories from patient partners, participants will explore the barriers to engagement in medical education and co-design strategies to support effective partnerships using a design thinking approach. Participants will move through each stage of the design thinking process- using empathy mapping to better understand both patient and faculty experiences, and then work in groups to identify opportunities for collaboration while sharing and refining the problem together, leaving the workshop with a practical tool for change, to test and potentially implement.

A.5 Workshop:

The Third Thing: Finding Powerful Stories in the Mundane Moments of Our Lives

Mike Lang, University of Calgary, Canada

Abstract: Dr. Mike Lang has won awards for his patient-focused health and wellness documentaries and has worked with over 900 patients, family members, and healthcare professionals to create short films (called Digital Stories) about thier healthcare experiences. Many of these stories have been embedded into educational curriculums, placed in museums, shared with political leaders, and been shared widely on social media, leading to significant healthcare policy and practice changes around the world. In this workshop, Dr. Lang will walk attendees through the process he uses with storytellers of all types to help craft meaningful and compelling stories from the experiences of thier life. Attendees will leave with a rough draft of a compelling story and a better understanding of how to find deep wisdom in everyday healthcare interactions. Learn more about Dr. Mike and his work @mikelangstories on all socials or via mikelangstories.com and commonlanguagedst.org.

A6: Oral Presentations: Engaging with Diverse Patient Populations

Understanding barriers and enablers to patient participation in education development for an online course for health care professionals: findings from a qualitative research study

Yona Gellert, University of British Columbia, Canada

Abstract: The field of continuing professional development and health professions education recognizes the value of patient involvement in education development. This engagement may vary from patients participating as co-researchers, co-developers, or reviewers (Towle et al. 2010). While engagement has been happening for over a decade, emerging practices to optimally carry out patient involvement are still required. Further, little is known about what motivates patients to participate in education co-development and how to engage patients with diverse backgrounds and experiences, in particular those facing systemic barriers or underrepresented populations.

To better understand some of these contributing factors, a team at the University of British Columbia conducted a constructivist grounded theory study to explore the enablers and barriers for people with lived experience to participate in co-development of a national and bilingual online course about abortion care for health professionals in Canada that focuses on improving access for underserved populations. In addition to exploring patient motivation to participate in education co-development, the research also considered what potential emerging practices may be helpful for future education development.

Through investigating an education project that exemplified best practices in patient involvement, we will share key findings from interviews with patients, subject matter experts and health professionals and discuss central insights into emerging trends and innovations for patient co-development of health education. 

Recognising Personal Strengths and Embracing Diversity within the Patient | Carer Community (PCC) – Lessons Learned at the University of Leeds, UK

Jools Symons, University of Leeds, UK.

Abstract: At Leeds Medical School, we are privileged to work with a diverse group of patients and carers who deliver high-quality teaching. This enables our students to gain invaluable experience from patients with a wide range of conditions, disabilities, cultural differences, and socioeconomic states. Diversity is too often measured by race and skin colour, but it is equally important to recognise the value of learning to communicate effectively with patients who have complex needs or physical illnesses.

Teaching different communication strategies, such as those needed to interact with neurodivergent patients, can be achieved by working directly with individuals living with these conditions. For instance, well-trained facilitators can use effective tools to redirect conversations with patients who frequently interrupt or lose focus due to their condition, ensuring that students learn best practices for obtaining necessary information during patient interactions.

As a team, it is crucial for us to understand our patient and carer group, working with their strengths and viewing their conditions and behaviours as opportunities for positive learning rather than obstacles. Additionally, it is vital for students to comprehend cultural differences and practices. Having diverse members helps challenge stereotypes and biases, reinforcing the individuality of each person.

By fostering an environment that embraces diversity in all its forms, we prepare our students to become empathetic and effective healthcare professionals, capable of delivering high-quality care to a diverse patient population. This approach not only enhances their learning experience but can also contributes to the overall improvement of patient care.

Partnering with people with lived experience of dementia

Heather Cowie, Alzheimer Society of British Columbia, Canada

Abstract: Join us for a compelling workshop focused on the topic of meaningful engagement opportunities for people with lived experience of dementia. It is critical that people with lived experience have opportunities to purposefully participate in and inform the work of the Alzheimer Society of B.C. in a way that recognizes their unique perspectives, experiences and abilities. This session spotlights the Lived Experience Partner Program for people living with dementia and caregivers and is co-presented by people with lived experience. We will explore the significance of elevating the voices of people with lived experience and highlight how their diverse stories can drive change and combat stigma. 

Additionally, this presentation will explore the key learnings from the first year of the program sharing insights on how to foster a culture that emphasizes the voices of people who are experts by experience, ultimately creating a more compassionate and inclusive community for those affected by dementia. The Lived Experience Partner Program provides opportunity for people with lived experience to co-create and deliver dementia education to students, health care providers and the general public. 

Educational and institutional strategies to promote the inclusion of mentors living in vulnerable and violent territories in Brazil and Canada

Milena Lisboa, BSMPH, Brazil & Cathy Kline, University of British Columbia, Canada

Abstract: This presentation aims to discuss one of the biggest challenges experienced by university management in the relationship with mentors who live in territories with multiple vulnerabilities: to create sustainable conditions for patients to participate in university health training as educators, in the Health Mentors Program (HMP), where they teach students from different disciplines based on their experiences of illness. The conditions of social inequality in Brazil, especially experienced by the Afro-descendant people, end up generating social determinants, such as poverty, racism and violence, which produce vectors of illness, creating a gap between them and the wealthier layers of the population, where most university students come from. In order to offer learning opportunities based on concrete experiences of illness, the university proposes the responsibility of teaching new professionals based on shared experiences from the perspective of patients who live in these territories marked by inequality. To ensure that the HMP can count on the participation of mentors who can teach about their experiences of chronic disease with strong social determination, it is necessary to create innovative and contextual educational and institutional strategic adaptations, in order to promote conditions of inclusion, safety and security for the meetings. Adapted from the model developed by the University of British Columbia, which remains a partner for the exchange and construction of international knowledge, we will present the main differences between the conditions of mentors in Brazil and Canada, and the institutional adaptations invented for educational and social supports. 

A.7 Oral Presentations: Research Studies

Revisiting liminality: A multi-year follow up study of the impacts of a service user advisory course for psychiatry residents

Csilla Kalocsai & Sacha Agrawal, University of Toronto, Canada

Abstract: The field of continuing professional development and health professions education recognizes the value of patient involvement in education development. This engagement may vary from patients participating as co-researchers, co-developers, or reviewers (Towle et al. 2010). While engagement has been happening for over a decade, emerging practices to optimally carry out patient involvement are still required. Further, little is known about what motivates patients to participate in education co-development and how to engage patients with diverse backgrounds and experiences, in particular those facing systemic barriers or underrepresented populations.

To better understand some of these contributing factors, a team at the University of British Columbia conducted a constructivist grounded theory study to explore the enablers and barriers for people with lived experience to participate in co-development of a national and bilingual online course about abortion care for health professionals in Canada that focuses on improving access for underserved populations. In addition to exploring patient motivation to participate in education co-development, the research also considered what potential emerging practices may be helpful for future education development.

Through investigating an education project that exemplified best practices in patient involvement, we will share key findings from interviews with patients, subject matter experts and health professionals and discuss central insights into emerging trends and innovations for patient co-development of health education.

Patient epistemic contributions to healthcare education through the lens of lived experience: A phenomenological approach of experiential knowledge in physiotherapy education

Felicia Bielser, Haute école de santé Vaud, Switzerland

Abstract: Patient experiential knowledge (Borkman, 1976) challenges knowledge production and legitimacy in healthcare. Despite abundant literature, this concept remains poorly delineated (Cartron et al., 2021; Dumez & L’Espérance, 2024). With pragmatic approaches highlighting its contextual validity and variability across participants (Borkman, 1976; Gross et al., 2017) a contextual understanding in healthcare education is needed. Rooted in a phenomenological approach within the “course-of-action” theoretical framework (Poizat et al., 2023), this study adopts a first-person perspective to understand how patients and students make sense of experiential knowledge during educational activities in physiotherapy education. Data comprised a) nine video recordings of joint educational activities (each approximately 1.5 hours), and b) seven self-confrontation interviews with patients and students transcribed verbatim (Poizat et al., 2023). Data analysis involved categorizing experiences across six dimensions (Theureau, 2004) and inductively thematizing experiential content. Findings reveal that the way participants sense epistemic contributions transcends factual events, encompassing explicit and implicit knowledge, immediate perceptions, and emotional dimensions. It reflects the dynamic interaction between past experiences, current actions, and anticipated future possibilities. The findings contribute to a better understanding of patient involvement in healthcare education and invite practitioners to explore reflexive journals supporting learning through patients’ voices. While grounded in physiotherapy education, these insights have relevance across health and social care disciplines, offering a framework for understanding patients’ epistemic contributions in interprofessional learning contexts.

Exploring the construct of just culture among patient and resident physicians in health care settings: a patient-oriented study

Fatima Duua, University of Calgary, Canada

Abstract: Background/Objective: The shift from blaming the healthcare providers involved to understanding the root cause of an adverse event is called ‘Just Culture.’ The following study aims to explore patient and resident physician perceptions of Just Culture within healthcare.

Method: We conducted a pragmatic qualitative patient-oriented study guided by constructivist grounded theory. Five research partners (two patients and three resident physicians) from equity-denied groups with lived/living experiences of safety issues and/or adverse event reporting within healthcare were engaged throughout the research. Sixteen semi-structured virtual interviews/focus groups (2-3 participants) were conducted independently with patients and residents. Domains of inquiry included the perceived influence of intersecting identities, barriers and facilitators to Just Culture and the interaction between hierarchy/power, privilege, equity, and patient safety.

Results: We generated five main categories from participant data: (1) medical hierarchy and power dynamics, (2) fear of repercussions and vulnerability due to status or position within the care system, (3) poor reporting experiences normalizing learned helplessness, (4) existing and potential facilitators to reporting, (5) strategies to improve Just Culture. Our core category is trickle-down effects in healthcare and their relationship with perceptions of safety and justice.

Conclusion: Study findings help to address gaps in the literature on Just Culture as perceived by a learner population of medical trainees and end-users of the healthcare system. Study results have the potential to influence policy and educational practices within healthcare and medical schools, fostering safer and more equitable environments for patients and residents.

Meaningful patient involvement in health professions education: Exploring issues of boundary and identity

Amber Bennett-Weston, University of Leicester, UK

Abstract: Background

Following recent changes to policy, it is expected that healthcare schools involve patients as partners in the design, delivery, and evaluation of professional curricula. We do not yet understand what these partnerships mean for our academic communities and the processes needed to support them. In this presentation, we explore what it means, to key stakeholders, to involve patients as partners within the academic community.

Method: A qualitative case study design was adopted, underpinned by a social constructivist philosophical stance. Communities of Practice served as the theoretical framework. Semi-structured interviews were conducted with patients (n=10) and educators (n=10) from across a Medical and a Healthcare School. Five focus groups were held with penultimate year students (n=20) from across the two Schools. Data were analyzed using reflexive thematic analysis.

Results: Two overarching themes were generated: Boundaries and Identity. There are boundaries between patients, educators, and students which can hinder patients’ meaningful involvement in healthcare education. Boundaries are marked through differences in knowledge, a lack of shared vision, and a lack of trust in patients. Patients, educators, and students have separate distinct identities. They experience tensions of identity when they come together across boundaries. These tensions reveal insights into the construction of the typical ‘patient’ identity in healthcare education.

Conclusions: Applying Communities of Practice has, for the first time, illuminated issues of boundary and identity that stakeholders experience when patients are involved in healthcare education. These findings deepen our understanding of the processes needed to support patient partnerships in healthcare schools.

Integrating Lived Experience into Mental Health Education: Findings from three literature reviews

Yudit Namer, University Twente, The Netherlands

Abstract: This synthesis integrates findings from three literature review studies (a mixed-methods review, a qualitative scoping review, and a narrative review) exploring Patient Involvement (PI) in Mental Health Education (MHE), highlighting its value for different stakeholders, necessary training mechanisms, and key implementation strategies.

Findings collectively emphasize that PI enhances students’ knowledge, attitudes, and competencies. PI deepens comprehension of mental health and clinical contexts while fostering holistic perspectives. It also reduces stigma, encourages critical reflection on academic methods, and improves clinical skills, ultimately preparing students for future practice in mental health care. However, successful implementation requires structured training and support for both patients and educators.

Training mechanisms play a crucial role in optimizing PI’s impact. Patients benefit from guidance in communication, boundary-setting, and self-care. Educators must create a safe learning environment, facilitate productive student engagement, and integrate patient narratives into meaningful learning objectives. Support systems, including institutional advocacy and structured debriefing sessions, are vital for sustaining effective PI.

A comprehensive checklist for implementing PI in MHE was developed, categorizing stakeholder needs into Interpersonal (self-determination, collaboration, and support) and Course (content, organization, and teaching). These elements underscore the importance of patient autonomy, inclusive course design, and fostering collaboration between educators, students, and patients. The checklist will also be introduced to the audience.

This synthesis will provide a roadmap for integrating PI into MHE, advocating for structured training and institutional support to maximize educational outcomes and improve mental health care practice.

A.8: Oral Presentations: The Patient’s Voice

Integrating the patient’s voice within health professional pain education: Development and piloting of a novel educational intervention

Timothy Wideman, McGill University, Canada

Abstract: Chronic pain is a leading cause of global disability and healthcare expenditure. Canada’s national Action Plan for Pain aims to address this challenge by calling for transformative change in how pain management is taught in Health Professional Education (HPE) programs. The national plan emphasizes integrating people living with pain as partners in HPE and helping students better understand and address the suffering they often experience. This presentation highlights recent work—conducted in partnership with people living with pain—to design, implement, and evaluate an innovative educational intervention that addresses these priorities.

The first phase involved building consensus across a diverse group of people living with pain to identify what they believe HPE students should learn about the lived experience of pain. This process yielded seven key themes, which became the focus of the intervention. The intervention included one-on-one online discussions between HPE students and people living with pain, guided by an interview guide based on the seven themes. These conversations were followed by group discussions where students reflected on their learning and identified areas for growth.

The intervention was integrated into the compulsory curriculum of two cohorts in McGill’s physiotherapy program. Students described the experience as transformational, helping them understand what it is like to live with pain and how to partner more effectively with patients. People living with pain reported high satisfaction and good alignment with best practice in partnered HPE. Lessons learned and future directions for implementation across additional HPE programs will be discussed.

Patient Voices in Norwegian Nursing Education; three perspectives

Catrine Buck-Jensen, Asne Knutson Depresno, Kim Fangen, Frank Oterholt, Arctic University, Norway

Abstract: Global challenges like health personnel shortages and lack of recruitment to nursing education programs necessitate innovation and reorganization of healthcare services and future education. The Norwegian community emphasizes equality and democracy; however, health professions education is not required to involve patients, and when it does, it relies on individual instructors, often randomly.

The purpose of this project is to develop research-based knowledge on how students, patients, and educators in Norwegian nursing education experience patient involvement. The research question is: How can patients be actively involved in Norwegian undergraduate nursing programs?

The study is positioned within a collaborative research paradigm where co-creation is a central premise. Data were initially generated through three digital workshops, respectively, with patients, undergraduate nursing students, and nursing educators. Furthermore, all participants were gathered physically for a 1-day co-creation workshop. The overarching goal of the workshops was to explore experiences from the participants` different perspectives and co-create proposals for models that can be piloted in nursing education in Norway.

The preliminary findings show that interaction with patients outside the clinical context can enhance the understanding of holistic patient care. Students and patients express a wish for more involvement of patients, while the educators are more pragmatic in their approach, and some still want to ensure the quality of educational activities. Participants articulated a need for developing a systematic approach to recruiting, planning, and conducting learning activities where active patient involvement is central.

When the Teacher Becomes the Subject – Disability education that hits too close to home

Scott Dunham, Canadian Memorial Chiropractic College, Toronto, Canada

Abstract: When the Teacher Becomes the Subject – Disability education that hits too close to home

Disclosing a disability in the workplace is a significant decision, as stigma and biases can be barriers for seamless workplace integration. As an educator, disclosing one’s own disability to students can impact relationships and group dynamics central to the learning process. Both positive and detrimental outcomes can result from doing so, impacting both students and educators.

Health professions education may be unintentionally exclusionary as students with documented disabilities are far less prevalent than in other education fields and in the general public. Those who seek out care need to see themselves reflected in their healthcare providers, and students with disabilities likewise value seeing themselves represented by those that teach them.

This presentation explores the nuanced relationship between the teacher with a disability and their health profession students. Opportunities and impediments are uncovered through critical analysis of these dynamics and a review of the literature pertaining to health educators with disabilities. Personal anecdotes will contextualize the value of representation of those living with disabilities within health professions education

The patient’s voice in continuing medical education publications

Bonita Sawatzky & Lynda Bennet, University of British Columbia, Canada

Abstract: The patient-educator has been well documented in the literature now for undergraduate medical education or other health professional training. For most parts this role patients are given are to share their experience for students to learn history taking and clinical skills for various conditions.l For other patient involvement it also includes sharing their stories in classes as well as small group learning environments such as a health mentor model. These all contribute to teaching new upcoming physicians a bit about the patient’s lived experiences which doesn’t come from a textbook. However, can we provide some of this lived experience in a textbook or professional (clinical) handbook for specialised learning after they are in practice?

This presentation shares the process and stories of how an academic, clinician and a person with lived experience worked together to contribute to a clinical handbook for trained rehabilitation therapists who specialise in seating people with disabilities. This presentation will show that sharing case studies in book chapters can go beyond describing a generic patient to inviting a patient to share in greater details the personal journeys that might be encountered in going through assessments to receiving care. This approach gives a more comprehensive perspective from a patient without the potential biases from the academic and clinical “experts” who write these textbooks. This presentation will be given by both the academic and patient authors of this book chapter.

A.9 Visual Arts: Digital Story Telling and Youth

Meaningful engagement with young adult siblings through digital stories

Linda Nguyen, Samantha Bellefeuille, Jessica Havens, University of Calgary, Canada, & Krystle Schofield, Victoria, Canada

Abstract: Siblings are growing up alongside their sibling with a disability, where they can support each other during the transition into adulthood. Since 2018, a Sibling Youth Advisory Council (SibYAC) comprised of young adult siblings who have a sibling with a disability have been partnering in research. They have identified the need for supports as they prepare for their roles to support their sibling with a disability.

In this proposed Visual Arts presentation, we will discuss the following:

1. Research (5-minutes): A brief overview of how we have partnered together to conduct research, and identified different roles that siblings may have during childhood, adolescence, and emerging adulthood.

2. Purpose and process of digital storytelling (DST) as a tool for knowledge translation (5-minutes): As part of a larger study to develop a toolkit to support siblings who are youth and young adults, two SibYAC members worked with a digital storytelling facilitator to create short films, (DST), about their experience as a sibling and the resources that could be helpful for their roles.

3. Digital story screening (10-minutes): We will showcase the two digital stories.

4. Key messages and reflective discussion (10-minutes): The digital storytelling facilitator and two SibYAC members will facilitate a reflective discussion about the digital stories and their key messages with the audience.

These digital stories can be shared as educational tools to recognize the need to support siblings and ultimately support the whole family of children with disabilities.

Library of Lived Experience: An Innovative Tool for Health Education

Daniel Goldowitz, Jesman Punian, Symbia Barnaby, Rebecca Bradley, Shayna Kershaw & Sierra Vanderdeen, Vancouver, Canada

Abstract: The emergence of patient-oriented research in health care has been welcomed by patients, clinicians and policy makers. Its impact has been evidenced in many areas of research and care; however, there are notable shortcomings in: 1) the accessibility of evidence-based information on neurodevelopmental disorders for families, 2) the availability of patient knowledge repositories, and 3) the inclusion of patient voice in evidence and policy making. Bridging these gaps was the catalyst for developing the Library of Lived Experience: Neurodevelopmental Conditions in Children and Youth.

Our Library has been shaped by the voices of lived/living experience. Our goal is to recognize individuals as partners and experts of their own experience to enrich literature with the nuance of patient experience. Key topics we will explore in our session include: (1) involving patient partners in the development of the Library; (2) highlighting voices of lived and living experiences as evidence to support the education of health and social care professionals and (3) libraries of lived experience as innovative tools for supporting health policy and research.

This session will be facilitated by members of our Leadership Group and Advisory Group, whom all have lived experience, as well as our Project Lead Daniel Goldowitz. Audience members will be part of a conversation about the magnitude of impact achieved by prioritizing the voice of lived/living experience, the development of the Library using the novel Tapestry tool, and how the Library can be used as a tool for timely impact on policy, education and health systems.

Co-Designing Support for Family Members by Family Members: Centering Family Voices in Youth Mental Health Education through Video Storytelling

Alexxa Abi Jaoude & Jana Vigor, Centre for Addiction and Mental Health, Toronto, Canada

Abstract: Families are often the first and most consistent support system for youth navigating mental health challenges yet they frequently face uncertainty, barriers and isolation while trying to access help for their loved one. In response, CAMH’s RBC Patient and Family Learning Space and Slaight Centre for Youth in Transition, co-developed a video series with family members of youth with experiences of early psychosis.

The series—“Navigating Youth Mental Health: Perspectives from Families”—was developed through a family-led collaborative process and consists of seven video vignettes (two to seven minutes in length). The video series, available on YouTube and camh.ca, highlights the lived experiences of caregivers, offering practical guidance for other families trying to navigate the mental health system. Through storytelling, the series explores themes of recognizing early signs and symptoms, diagnosis, service navigation, communication, and hope. Integrated into each video are links to relevant resources and services, empowering viewers with accessible information to help navigate Ontario’s complex mental health landscape.

This presentation will highlight video clips, discuss co-design principles and process, share participant feedback, and discuss how video as a creative medium enables authentic, scalable, and accessible patient education. We will also discuss challenges related to ethical storytelling, building trust, and institutional barriers. By embedding the voices of families directly into educational resources, this project enhances mental health literacy and service navigation while positioning families as valuable educators and support systems. Attendees will leave with practical strategies for co-designing ethical, impactful, and accessible educational resources with caregivers.