Dying to tell my story; Digital stories as research and advocacy

Drs. Kortes-Miller and Sprakes discuss digital storytelling (DST) as an innovative research method that amplifies participants’ lived experiences. They will share different approaches to DST, focusing on medical assistance in dying and the opioid epidemic in Canada. As part of the panel presentation, DSTs from each area will be shared, and a discussion on how to use stories and narratives for empowerment, education and advocacy will be offered.

Digital storytelling has its roots in the 1990s, its inception widely attributed to Joe Lambert and the late Dana Atchley, at the Center for Digital Storytelling in Berkeley, CA, who sought to democratise experiences of media creation (StoryCenter, 2022). As such, digital storytelling does not require professional equipment and/or technological skills beyond basic competency to use a specific software platform. Digital stories are usually 2–5 minutes in length, have a first-person narrative, and may use still and/or moving images, music, or sound effects to tell a story about a person, event, or issue (Lambert, 2009). There is no fixed curriculum involved in the model of digital storytelling; this flexible approach can then contribute to an empowering experience for the creator (Juppi, 2017; Wexler et al., 2013), and often a transformative one for both creator and viewer (Alexandra, 2008). Traditionally, DST engages participants in intensive, group-based workshops, typically comprising eight to 12 participants, over the course of several days. Facilitators guide the creative process and troubleshoot the technological aspects (Lal et al., 2015). Some evidence suggests that while the workshop culminates in a product—the digital story itself—it is the process of creating one that is of more value to the participant (Juppi, 2017). However, in terms of research methodologies, it is understandable that disseminating the stories is also integral to the study (Lenette et al., 2019).

Therefore, the purpose of this panel is to afford conference attendees an enhanced understanding of the role of DST through the experience of family and friends who have accompanied someone who chose to access medical assistance in dying, and individuals' access to care within the opioid epidemic in Canada. This panel will: (I) provide an overview of Digital Storytelling, the diversity of methodological designs, followed by the sharing of two separate studies and the screening of four brief digital stories; (II) explore the process of community engagement and the role of advocacy as a potential outcome of DST. The session will include audience discussion (in small groups) about the use of DST, experiential learning and key takeaways from the stories to promote policy development. Digital storytellers in these studies created authentic stories about their experiences within spaces that provided the appropriate amount of emotional and technological support. This combination was understood to be integral to participants’ ultimate goal: the production of stories that would ideally garner understanding and empathy and provide education in the face of falsehoods and disinformation about MAiD and the Opioid Epidemic.

Expanding on these goals, the panel will emphasize that DST is more than a storytelling exercise; it is a methodology that negotiates between research, pedagogy, and advocacy. The two case studies being shared represent highly sensitive and often controversial social issues. Medical assistance in dying raises questions of morality, autonomy, and systemic inequities in access to end-of-life care. The opioid epidemic continues to be framed by stigma and misinformation, often obscuring the lived realities of individuals and families. By using DST in these two contexts, Kortes-Miller and Sprakes invite participants to reflect on how personal narratives within qualitative methodologies can unsettle dominant discourses and push institutions/systems to rethink their policies and practices.

Importantly, the panel will highlight how DST can bring attention to the often-unheard perspectives of caregivers, families, and individuals whose voices are absent in mainstream debates. The format of short, first-person multimedia stories makes the content accessible to diverse audiences and encourages affective engagement. This capacity to move audiences emotionally is part of DST’s strength, particularly when addressing topics that may otherwise be abstract or polarizing. For instance, stories about navigating MAiD can challenge stereotypes and clarify misconceptions about consent, support, and dignity. Similarly, stories about the opioid epidemic can shift narratives from criminalization to compassion, centring the structural barriers and systemic inequities that fuel the crisis.

The panel will also address methodological considerations, including the ethical responsibility of researchers to create supportive spaces for participants. Facilitators must strike a balance between technical guidance and sensitivity to the personal and sometimes painful nature of the narratives being shared. This requires both relational care and attentiveness to trauma-informed practices. Drs. Kortes-Miller and Sprakes will discuss strategies for ensuring participants retain agency over their stories, including decisions about what to include, how to frame their narrative, and whether and how the stories will be disseminated publicly. Such practices ensure that DST remains grounded in principles of respect and reciprocity.

In addition, the panel will invite participants to consider the transferability of DST beyond these two specific case studies. While MAiD and the opioid epidemic are urgent sites of inquiry in Canada, the methodology has potential applications in a wide range of fields: education, health promotion, reconciliation initiatives, and immigrant and refugee settlement, among others. The core strength of DST lies in its adaptability and its ability to meet people where they are, both technologically and emotionally.

By the end of the session, attendees will not only have witnessed powerful examples of digital storytelling but will also have reflected on the process, ethics, and impact of using this methodology. The expected outcome is a collective recognition of DST as a tool for social change, capable of building bridges between research evidence, lived experience, and policy development. Through the stories shared, participants will be encouraged to think critically about how digital storytelling might be applied in their own work, whether as researchers, educators, or advocates, and to carry forward the insight that narratives have and the power to transform not only individual perspectives but also broader systems of care and decision-making, including cultural conversations, institutional practices, and public policy priorities in lasting and meaningful ways.