Visual storytelling as democratizing knowledge: relational concepts of transdisciplinary health impact through film

Abstract

This paper examines the transdisciplinary collaboration between health practitioners, Indigenous community members, and doctoral researchers to democratize knowledge transfer enhancing social justice outcomes in the context of hepatitis C awareness with Indigenous communities in Alberta, Canada. Utilizing the impactful intersection between media and healthcare disciplines, two social science researchers built on each other’s qualitative research projects using relational engagement and participatory action research to co-create a DocuStory film and accompanying impact campaign. Diverse expertise and varied life experiences contribute unique perspectives transferring insights informing knowledge translation. Communication scholars, media producers, and academics are exploring the social function of documentaries and how they can be used to generate change. This innovative collaboration draws on the strength and creativity of transdisciplinary relationships providing opportunity for social justice praxis at the intersections of culture, theory, health, and media. This successful approach is relevant for numerous health topics and inspires transdisciplinary collaboration and media innovation in health promotion.

Social science researchers combined media expertise, healthcare experience, and a shared passion for relational engagement and social justice to co-create a DocuStory film and impact campaign raising wholistic awareness on hepatitis C (HCV) with Indigenous communities in Alberta, Canada. Health inequity impacts many communities and populations, especially surrounding access to healthcare and lack of culturally connected health awareness resources for Indigenous People in Canada (1). Within the media sector, documentaries can be resources shaping public discourse around social issues, and media producers, alongside academics, are exploring the social function of documentaries to generate change (2,3). Similar to knowledge democracy, this transdisciplinary collaboration sought to accept multiple epistemologies, combine theories, allow knowledge generation and connection to culture, develop pragmatic ideas, create conceptual models contributing to social justice praxis, disseminate knowledge in numerous forms including story and image, and support a process aimed to create positive social outcome fostering democracy (4). Transdisciplinary research draws on a combination of scientific and non-scientific knowledge from multiple disciplines into a humanities context integrating perspectives in a Two-Eyed Seeing framework and transcending disciplinary boundaries to solve common problems (5). This requires iterative goals, a broad foundation of thorough preparation and a focus on effective communication between all partners, participants, and collaborators involved in the research, alongside frequent reflection and reflexivity (6).

This paper provides insights into the relational process of democratizing multiple sources of knowledge and multiple methods of dissemination including digital storytelling and impact planning to achieve health promotion impacts (7). To enhance democratizing efforts and importance of connections in fostering trusting relationships in qualitative research, the authors will position themselves in the following introductions and throughout the paper.

Introductions and context

Author1: Introductions are an important beginning, a way to see the connections we have in common, foster trust and build relationship; within Indigenous circles this is where we start. I am a member of Mississaugi First Nation near Lake Huron in Ontario, Canada. My ancestry includes European heritage and it is the combined strengths of cultures, family values and proud histories that inspired me to gain an education and share back. Working as a nurse while seeking opportunities to connect wellness initiatives and community engagement, I began reconnecting to my First Nation community and Indigenous Ways of Knowing, Being, Doing and Connecting through traditional ceremony, language, Knowledge Keepers and approaching life as a wisdom seeking journey. While coordinating an HCV treatment pathway project, Indigenous healthcare providers asked for help to address the gap in awareness resources for HCV which motivated my enrollment in a social sciences doctorate program, where on the first day I sat in the back row and hesitantly engaged with the person who sat next to me.

Author2: Introductions provide insights into the social context we exist within while acknowledging our identities and lived experience shaping our values. I am a gay white settler man of Scottish and English descent. Several family challenges affected my upbringing: a traumatic brain injury for one parent and ovarian cancer for the other. With a supportive family and social network, I followed my interest in storytelling pursuing a diploma in Film and Television production. I began working for Discovery Channel Canada traveling internationally with documentary crews filling various roles. Meanwhile, my interest in people, storytelling, and social justice led me to co-found a non-profit that served marginalized communities in Jamaica and Nepal. While working for production companies and volunteering, I became curious about how digital storytelling creates impact. I began my doctoral program and, as an introvert, I quietly sat down next to Author1.

Transdisciplinary relevance

Within the personal and professional context explored above, we shared why we wanted to do more in our respective fields of knowledge, and an idea was born. Prior to delving into specific qualitative methodologies and frameworks used in this collaboration, contextualizing our research and identifying the gaps in our respective disciplines establishes the real-world problems involved.

Health and power context

Author1: The biomedical scope of nursing practice focuses on clinical algorithms for treatment linked to a set of symptoms or diagnostics and focuses on disease (8–11). Indigenous wellness perspectives focus on physical symptoms within a context of balance including spiritual, mental, and emotional aspects (1,9,11,12). These differences are evident in health education resources distributed by public health organizations focused on organisms, disease progression and treatment compliance (8,13) highlighting the disconnect and power imbalance between knowledge dissemination with biomedical focus on facts and compliance. Within a Two-Eyed Seeing framework (12) we can compare an Indigenous wholistic model’s focus on interconnected relationships between the natural world, spirituality, social-emotional connections, and mental and physical health in the context of balance. This gap shows a need for democratizing knowledge using story and visual media in motivating health behavior change (14).

The historical and current interconnected systems of power within Canada have been shaped to meet the needs of, and facilitate the goals of, specific populations often at the expense of people whose lived experience reveals vast inequities in access to basic human rights including but not limited to clean water, affordable food, adequately funded education, accessible and culturally safe healthcare, positive social-service supports and healing-focused justice approaches (1,15,16). Broken Treaties, legislation such as the 1865 Indian Act, continued intergenerational impacts of disruption from family, language, culture and the abuses within and beyond the Indian Residential School system provide context surrounding higher rates of infectious disease, mis-use of substances and the disease of disconnection among Indigenous People in Canada (1,15,16). HCV is a blood-borne infectious disease associated with increased stigma related to increasing rates within the multiple intersections of race, lower health literacy, health access inequity, substance use disorder, correctional systems, or people who inject drugs (1,16,17). Nearly half of those in Canada infected with HCV are not aware of their infection and the silent progression of HCV may lead to cirrhosis and potentially liver cancer, leading to more life years lost than any other infectious disease in Canada (17). Shifting to a wellness focus, the liver is one of the few organs in the body with ability to regenerate and heal damaged tissue (17). This Two-Eyed Seeing approach of bringing aspects of biomedical and Indigenous perspectives into one context inspired co-creation of an audio-visual liver story incorporating wellness, culture and land-based visuals in a transdisciplinary approach to health awareness (1,12,14,18).

Documentary and discourse context

Author2: Documentaries are growing increasingly popular and contribute to public discourses surrounding important social, political, and environmental issues (2,3). Compelling storytelling can attract audiences to learn about important issues, and additionally, there is growing interest from academia and impact practitioners pertaining to documentaries as catalysts for change through strategic and coordinated impact campaigns (19). In an increasingly digitally interconnected world, Borum-Chattoo and Feldman remind us that there is ‘need for communication scholars, social-change communicators, and media producers to engage with one another–both in the production of stories and development of public engagement strategies’ (20 p 694). Filmmakers tell stories to make people feel; and now there is a need to explore how community outreach and engagement can affect social change processes. Storytelling and strategy can be developed by media producers and impact practitioners, along with social issue leadership, to offer pathways of action for audiences to take toward behavioral change (21). Emotion and connection combined with simplicity and communication can be the impetus for action (22). Impact producer is an emerging term used in the film and television industry to describe those responsible for maximizing and deepening the social impact surrounding a film (23,24). This involves finding a balance between a compelling story, social issue engagement and co-designing an impact vision. This can occur by building capacity through developing partnerships with social issue outreach ambassadors, communities, organizations, and government who work together through mutual thematic interest within a film that advocates social change (23). Social issue documentaries play a significant role in discourse, therefore, more attention should be given to learning how to reach and engage audiences on issues affecting society (2,3,19). Definitions of impact, and impact campaigns, vary per organization and context. HotDocs, one of North America’s largest documentary festivals, states that to them, impact means ‘. . .social and cultural change that has been driven by a documentary film and its associated campaign strategy’ (23 p 4). Similarly, DocSociety in the United Kingdom believes that impact campaigns assist emotive stories by orchestrating strategies and plans to create action supporting social change (25). Discovering this emerging field within film inspired further learning curiosity, and exploring how to co-create an impact campaign became my research focus, and HCV awareness became the compelling story.

Democratizing knowledge discourse through Indigenous knowledge, qualitative methodologies and methods

The gap in culturally connected awareness resources on HCV increases stigmatization of the infection and alienates people from accessing treatment. Nesting HCV facts within the traditional Indigenous frame of land-based storytelling and independently producing this as a film and strategic impact campaign showcases transdisciplinarity.

Author1: Health information shared from a biomedical perspective through written word maintains control of the narrative in health resources by supporting the interconnected systems of power as the expert authority. Social science partnered with innovative collaboration challenges this power differential by democratizing knowledge generation and dissemination through a co-creation process. Initial conversations with Indigenous community members prioritized the need for culturally connected awareness resources and led to formative interviews with Indigenous healthcare professionals across multiple organizations gathering insights on relevance of the approach and projected output. Working within Indigenous Methodologies and Two-Eyed Seeing framework values experience and insights from Indigenous Ways of Knowing alongside biomedical models of community health and nursing practice (1,12,14).

Recruiting using a relational snowball approach across the three treaty areas in Alberta, Canada, I connected with eight Knowledge Keepers, four women and four men, who were respected in their communities for their wisdom and various contributions to knowledge and community. Using narrative inquiry through open-ended conversational interviews respecting Indigenous protocols, I visited with these Knowledge Keepers as participant-partners either in-person or virtually (14). This approach combined aspects of Participatory Action Research (PAR) with Indigenous Methodologies and traditional storytelling, valuing the knowledge shared by each participant-partner, then building on each session through feedback loop circles and sharing with the other participant-partners. This moved towards shaping the knowledge shared around liver wellness into themes, providing the structure and script for a DocuStory (25). This relational focus inspired involvement in knowledge co-creation and knowledge exchange, and felt like a journey the participant-partners and I were enjoying together (18). Traditional Indigenous ceremony was included in each step of this journey from idea inception to conversational interviews, theme analysis, and shaping the script and settings for filming. Several of these participant-partners chose to participate in the filming phase of the project, and each participant-partner screened the film before it was shared publicly, continuing the relational co-creation of democratizing knowledge.

Innovative approaches bring unique challenges and the multiple partners brought different knowledge expertise and various ideas into the creative process. For example, I am a detail-oriented independent nurse; I am also an Indigenous woman reconnecting to my culture where value is placed on relational approaches such as incorporating ceremony and spirituality, listening through the heart, community consensus, and taking time to engage with the land and those around you. Each of the eight participant-partners brought their own intersections with knowledge and lived experience, and differing Indigenous cultural perspectives including Blackfoot, Cree, Metis, and Stoney-Nakoda. Combining these perspectives and collaborating with a media specialist who sees things from a filming, editing, production, and impact producing lens brought lots of opportunity for misunderstanding or frustration. I am a reserved camera-shy person who had zero media experience but had an intuitive sense of what would help shape the message through cultural connection and visuals accompanying the storyline. There were numerous situations where Author2 and I each had ideas in mind, but through thoughtful conversation realized we were visualizing very differently. We learned to synergize and build on the strengths of our differing experiences and intuition. Author2 and I developed a sense of camaraderie and often our best moments of clarity and creativity shaping the film occurred on breaks while hiking, biking or rafting, affirming the power and influence of connection to land on engaged and participatory community research. These dynamics were further layered by continuously nurturing relationship and communication with the participant-partners as they had the power to stop this project at any point. This may sound like a simple and streamlined journey on paper, but in retrospect it was messy and stressful balancing all the personalities, responsibilities, funding constraints, pandemic restrictions, and community politics. No aspect of this project would have happened without trust, vulnerability of relationships, or the mutual desire of all involved to co-create a resource supporting Indigenous community wellness.

Foundational aspects of transdisciplinary work are trust and synergy and this project also centered around culture, beginning with a sweat lodge ceremony and feast to bless the project, the conversations and relationships. Before each conversation with participant-partners I would smudge, pray and present ceremonial tobacco and gifting protocol, acknowledging reciprocity and the gift of knowledge. Smudging and prayer also prefaced each thematic analysis session, script working session, planning locations and filming. A special blessing ceremony was held to wrap up the project before the Docustory was shared publicly. Frequent pauses for reflection, journaling, time on the land and conversations with the mentoring Knowledge Keeper were also integral influences on the co-creation process.

The filming phase was carefully positioned between our respective doctoral research projects to facilitate the resulting media product remaining a freely accessible and community-owned resource (Supplement 1: available at: vimeo.com/838428539?share=copy). Author2’s participatory action research on impact aspects of media began once filming was complete.

Docustory and participatory action research

Author2: Participants generated ideas about how the DocuStory could create a positive impact in their community, illustrating how participatory and cyclical feedback processes can contribute to local ownership in generating knowledge, planning and leading to control over outcomes (26). Financing, filming, and editing a film is a huge undertaking; producers often put their hearts into creating art that inspires and challenges audience perceptions, leaving little room to strategize about how a film could be a catalyst for change. In social issue documentaries, the environment the story exists within is a complex ecosystem of relationships, networks, politics, and knowledge that is intimately understood by those who exist in the ecosystem; sharing this knowledge with impact practitioners can help plan impact (24). Engaging social issue leadership within the ecosystem of impact and strategy can increase the likelihood of achieving positive change. Therefore, my research design required a methodology and intervention model that supported engagement and iterative discussions of impact planning (24).

A PAR approach was adopted to democratize knowledge searching for practical solutions recognizing the value of participant knowledge in shaping the discourse and improving practice through cyclical patterns (25–28). The goals of action research include: achieving action-oriented goals, creating results that are relevant to local context, advancing researcher and participant awareness, and generation of knowledge (25). Discussing, planning, acting, reflecting and beginning the cycle again allows participants and researchers to analyze outcomes and adjust strategy to reach goals (25).

Building on the relationships Author1 established, I visited a First Nation wellness center and shared the research goals with a nurse who invited others interested in participating in what became the DocuStory Advisory Committee (DAC). These participants were different from Author1’s who crafted the story; the people in my research began planning impact for the DocuStory. The committee consisted of myself, both non-Indigenous and Indigenous health practitioners, a local Knowledge Keeper and Author1 as HCV outreach ambassador. These individuals were interviewed after each of the five DAC meetings providing them with time to reflect on ideas, questions, or concerns that arose from the session. The project continued to expand and additional non-Indigenous health practitioners participated in one-time indiviual interviews for the study.

During our first DAC meeting, the Knowledge Keeper offered prayer, we learned about HCV and viewed a clip from the DocuStory. The DAC appreciated the cultural representation and reported feeling a calmness from the land-based visuals of animals and nature scenes, seeing the film as an optimistic health message moving away from the stigma that is often associated with HCV. Next, I introduced the impact model, referred to as Compass of Change (21), as an intervention model. We discussed the importance of story, culture, relationality and planning in developing an impact vision (21). After the session, conversational interviews were scheduled with each participant. Analysis involved coding and identifying themes to share back to the DAC through iterative cycles of discussion, action, and reflection. Temporary project leadership models that were followed focus on themes of complexity, commitment, vision for success and leadership approaches (29). Additionally, Green and Patel’s engagement and lasting impact media performance measurement framework was used to explore themes of: meaningful goals, understanding community, measuring quantity and quality of engagement and demonstrating impact (30).

Over two months, interviews occurred in person and virtually where the DAC shared their vision for impact. Relationship building with stakeholder teams who have an objective to achieve specific activities can occur through formalized committees or informal gatherings, where goal-creating and collaborative work sessions can cycle through plans, issues, reflections and revisions (31). The committee wanted to show the DocuStory at a community event and provide HCV screening, lunch, and prizes. We sourced event sponsorship and committee members received training on dried blood spot (DBS) HCV screening where they learned how to collect blood-drop samples from finger pricks to be sent for processing as a low barrier option for community-based screening. I joined the lead nurse onsite to assist planning and to meet community sponsors, scout locations and speak with community leaders. The DAC navigated the compass of change model (21) to develop ideas, discuss, reflect, and repeat.

The liver health day was the result of DAC efforts and collaboration. A Knowledge Keeper began with prayer followed by screening of the DocuStory and open discussion time where the outcome led to nearly 50% of the audience completing HCV screening. Five Elders in particular were engaged by the story portrayed in the DocuStory, felt safe to ask questions and proceeded to have their blood tested. Involvement from Elders is significant as it demonstrates an understanding of the value of the topic and often younger generations will follow this lead. Next, at a provincial liver conference, the DocuStory was shown to over a hundred provincial healthcare workers with follow-up surveys. Several organizations engaged following this event to spread awareness, thus beginning cycles of planning, action, and reflection to work toward a shared goal of expanding impact and reach. Two other First Nation communities began planning for liver health day events and reported record levels of engagement, further demonstrating growth of an idea orginating from listening to the needs of community into a transdisciplinary action-research project collaborating knowledge to co-create an impact campaign (Supplement 2).

Over the next year, additional outcomes included Indigenous Health Canada sponsored USB keys so the DocuStory could be mailed to all Indigenous health centers across the province of Alberta. Two national health websites, Canadian AIDS Treatment Information Exchange (CATIE.ca), and the Canadian Liver Foundation (liver.ca) agreed to host the DocuStory on their website for free open-access. The DocuStory also received recognition and accolades in a wide range of film festivals across Canada, USA and Australia. The film festival circuit may speak to the quality of this project; however, it is important to note that the DocuStory would not have reached the people it was intended for without impact planning, engagement, and strategy. Author1 and I explored ideas, leads and maintained relationships so the DocuStory continues to generate impact. Collaboration, co-creation, deep listening, and strategizing led to greater reach in the audience the DocuStory was made for. This would not have occurred without the intersection of our ideas or without the trust Author1 and I built with each other and our research partners; it allowed us to navigate complexity, explore and respectfully acknowledge culture and combine the valuable knowledge of many, to produce an open-access resource that continues to increase awareness.

Within disciplines, power dynamics and intersectionality can affect outcomes, and social impact theory suggests that the variables of physical, temporal or social immediacy, strength, and numbers of people contributing can affect influence (32); trans-situational and situational specific examples can be found by examining the people that were participants in the event (33). As a white man working in an Indigenous community, I had to learn from Author1 how to engage local knowledge and tradition respectfully. Similarly, in designing the impact model, I learned mindfulness in the language used and running approaches, diagrams, and documents by Author1 who often pointed out softer and more respectful ways to demonstrate points. I observed the relational and respectful engagement approaches Author1 practised, learning to show up bringing coffee, or dropping in to see how people are doing and being respectful in communication. As mentioned earlier, social documentary exists within ecosystems and nurture and respect are integral to grow relationships. This can shift the power dynamics by developing relationships that share leadership, thereby increasing likelihood of greater reach for impact campaigns.

Conclusion and call to action: Indigenous knowledge and co-creating health context

Author1: In a discipline-focused academic space, this transdisciplinary and collaborative knowledge sharing resource would not have been co-created, let alone made impacts in HCV awareness around the world. The DocuStory is widely available, with ongoing impact increasing liver health awareness, supporting safer spaces for conversations around stigmatized topics and motivating increased HCV screening. Involving the voice of Indigenous community members throughout the process from idea to impact campaign is a long overdue approach in disrupting power imbalance in shaping health promotion resources. Recognizing the value of perspectives and exploring, developing and prioritizing these to cross disciplinary, cultural and structural lines in co-creating wellness-focused resources re-imagines health promotion impact.

Indigenous knowledge and media context

Author2: Scholars continue to analyse the intricacies and benefits of digital storytelling’s emancipatory possibilities through self-expression, participatory opportunities and social engagement (34–36). In addition to the possibilities of collaboration in producing digital stories, there is a need to better understand the process and value of planning for impact and designing pathways to action for the audience (19). Incorporating digital storytelling and impact planning through transdisciplinary research allows for creativity and for different perspectives to generate knowledge. We demonstrated that the time spent developing and maintaining relationships matters and enhances outcomes. Synthesizing Indigenous Knowledge, social science methods, biomedical science, digital storytelling and social impact strategies can collaboratively democratize knowledge and affect meaningful change, shaping impact at community and international levels.

Supplemental Material

sj-jpg-1-ped-10.1177_17579759251317517 – Supplemental material for Visual storytelling as democratizing knowledge: relational concepts of transdisciplinary health impact through film

Supplemental material, sj-jpg-1-ped-10.1177_17579759251317517 for Visual storytelling as democratizing knowledge: relational concepts of transdisciplinary health impact through film by Kate P. R. Dunn and Gary W. Hayes in Global Health Promotion

Supplemental Material

sj-jpg-2-ped-10.1177_17579759251317517 – Supplemental material for Visual storytelling as democratizing knowledge: relational concepts of transdisciplinary health impact through film

Supplemental material, sj-jpg-2-ped-10.1177_17579759251317517 for Visual storytelling as democratizing knowledge: relational concepts of transdisciplinary health impact through film by Kate P. R. Dunn and Gary W. Hayes in Global Health Promotion