Listening, Learning, and Documentary Storytelling for Health
- Robyn Hussa
- 10 hours ago
- 8 min read
For over two decades, we've built our work on a simple but profound principle: the people closest to health challenges hold the deepest wisdom about solutions. Community-Based Participatory Research (CBPR) has emerged as one of the most powerful approaches for creating meaningful, lasting change in health outcomes.
Having conducted over 100 listening sessions, we've used the intimacy and authenticity of documentary storytelling to capture what often goes unheard in traditional research—the powerful stories of real people navigating health challenges in their daily lives.
What Is CBPR?
Community-Based Participatory Research represents a fundamental shift in how we think about creating knowledge and driving health improvements. Rather than researchers studying communities from the outside, CBPR brings community members to the table as equal partners in every phase of the research process—from identifying the questions to implementing solutions (Wallerstein et al., 2018).
The approach rests on several core principles:
True partnership: Researchers and community members collaborate, recognizing that both bring essential expertise to the table
Co-learning: Everyone learns from each other, valuing different types of knowledge—from lived experience to academic training
Empowerment: Community members gain skills and knowledge that enhance their ability to address local issues long after researchers leave
Action orientation: The research aims to create positive, transformative, and sustainable change (Wallerstein & Duran, 2006)
CBPR produces measurable results
A 2024 systematic review found that CBPR interventions were generally effective in improving health and well-being outcomes and eliminating particular health inequalities, with studies showing high levels of community engagement (Yau et al., 2024; Hicks et al., 2012).
A 2023 study examining randomized controlled trials using CBPR in disadvantaged populations found that 39% of studies reached the highest level of engagement—"shared leadership"—where communities and researchers truly co-govern the work (Riccardi et al., 2023). The research revealed that a history of collaboration was associated with higher engagement levels, emphasizing that building relationships takes time and sustained commitment.
Research teams have reported notably high recruitment and retention rates when using CBPR approaches (Vangeepuram et al., 2023). Our teams have also found that when communities help shape research that matters to them, they stay engaged.
The Sharpen Method and Documentary Storytelling
Emerging research demonstrates the effectiveness of documentary filmmaking as both a research methodology and a dissemination strategy. Brandt et al. (2016) used what they called the "coalition model of filmmaking"to create a documentary film featuring community members' personal stories, community profiles, and expert interviews. Their evaluation showed high levels of approval and satisfaction with the film. Importantly, the community took ownership of the film, viewing it as a vital tool for their ongoing work.
We have found that documentary filmmaking offers unique advantages for this type of participatory research:
Capturing authentic voices: Film preserves the emotional texture, body language, and context so community members share information along with humanity (Borish et al., 2021).
Honoring cultural ways of knowing: Documentary work honors storytelling traditions while creating modern tools for health education (Zemits et al., 2015).
Creating powerful educational tools: The films we co-create become critical parts of health interventions. Research shows that documentary films used in health education can significantly change attitudes and increase intention to change practice among viewers (Berreta et al.,. 2024; Anderson et al., 2017; Rabow et al., 2010).
Earning trust: The process of collaborative filmmaking creates sustained engagement and relationships. Healing and building health literacy can't happen without trust. (Baumann et al., 2020).
Our Journey: Two Decades Listening & Learning
20 years of our work has been guided by our unwavering commitment to listening deeply to the communities we serve. What began with live programs in schools and treatment centers—connecting over 4,000 individuals to treatment through Q&A sessions with clinical professionals and people with lived experience—has evolved into a comprehensive library of over 4,000 video-based health education tools built entirely on community voices (Hussa Farrell, 2024).
Our layers of "listening" have resulted in rich datasets that include:
Over 50,000 post-program surveys collected from students, parents, and educators helped us identify the 160 most commonly asked questions about mental health that communities wanted answered
More than 400 surveys and multiple community-based research projects demonstrated that adolescents found our documentary-style content relatable, engaged with the material, enjoyed discreet connection to treatment, and recommended the service to their peers (Levy et al, 2025; Biber, 2023; Spence et al., 2024; Fadel et al., 2024)
25+ research collaborations with institutions including Stanford Medical School, NYU Langone, Emory University, UC Berkeley, and the Medical University of South Carolina validate our approach across diverse audience groups and populations
1,656 medical and undergraduate students from five universities in Appalachian regions participated in studies deploying our psychoeducational modules, showing high implementation and maintenance rates (Beretta et al., 2023)
Our collaborative model has resulted in evidence demonstrating that our documentary-based approach builds mental health literacy, decreases shame and stigma, improves engagement with mental health education and treatment services, and strengthens resilience (Rios & Biber, 2024; Levy et al, 2025; Fadel et al, 2024; Biber, 2023; Beretta et al., 2023).
Our Process Includes ...
1. Deep Listening Sessions
Our documentary work begins with what we call "deep listening"—extensive strategic planning followed by unscripted interviews that honor community members as experts in their own experiences. Over hundreds of listening sessions, we've learned that the most powerful health education comes from children, adolescents and adults telling us what matters most to them.
2. Collaborative Analysis
We bring footage and preliminary findings back to the community. Together, we identify the most critical themes, the most compelling stories, and the key messages that need to reach others facing similar challenges. This co-learning process ensures that our interpretation of what we're hearing remains grounded in community wisdom.
3. Co-Creating Tools
The documentary footage becomes the foundation for culturally tailored health education modules—videos, training materials, and resources that speak authentically to communities.
Each module we create contains 15 elements designed through years of research and community feedback: documentary stories of resilience and strength, health education grounded in risk and protective factors, and resources to help someone support a friend or loved one. This framework has been validated across diverse settings—from foster parent training certified by the South Carolina Department of Social Services, to mental health literacy courses for 400+ college student-athletes at the University of West Georgia, to professional development for medical students and residents at multiple institutions.
Our approach has earned recognition from the University of Washington's SMART Center-vetted mental health literacy library for high school adolescents, has been deployed in New York City's five-year suicide prevention program funded by the NY Office of Mental Health, and serves as the foundation for mental health literacy training across multiple youth-serving organizations nationwide.
The only way this type of research can happen is through collaboration -- at the institutional level, the community level and at the family level. We are truly grateful to all of the partners who have made community based work possible.
References
Anderson C., Holody K., Flynn M., Hussa Farrell R. (2017). An exploratory evaluation of the feasibility, acceptability, and efficacy of the mental fitness disordered eating program in schools. Eat. Disord. 2017;25:230–245. doi: 10.1080/10640266.2017.1289793.
Baumann, S. E., Merante, M., Folb, B. L., & Burke, J. G. (2020). Is Film as a Research Tool the Future of Public Health? A Review of Study Designs, Opportunities, and Challenges. Qualitative health research, 30(2), 250–257. https://doi.org/10.1177/1049732319871251
Berreta, K., Nguyen, C., Stoner, A. M., Ridgeway, L., Wilson, A., Fadel, N., & Biber, D. (2023). A RE-AIM Analysis of a Mental Health App for Undergraduate and Medical Students during the COVID-19 Pandemic: A Retrospective Cross-Sectional Study. International journal of environmental research and public health, 20(13), 6266.
Biber, D. (2023). The Impact of an mHealth Mental Health Literacy Training for Foster Parents Prepared for Trends in Psychology. Trends in Psychol. (2023). https://doi.org/10.1007/s43076-023-00348-x
Biber, D., & Rothman, E. (2023). Qualitative evaluation of mental health literacy training for college females: Implications for peer mentoring programs. Journal of College Student Development, 64(1), 104-110.
Borish, D., Cunsolo, A., Mauro, I., Dewey, C., & Harper, S. L. (2021). Moving images, Moving Methods: Advancing Documentary Film for Qualitative Research. International Journal of Qualitative Methods, 20. https://doi.org/10.1177/16094069211013646 (Original work published 2021)
Brandt, H. M., Freedman, D. A., Friedman, D. B., Choi, S. K., Seel, J. S., Guest, M. A., & Khang, L. (2016). Planting Healthy Roots: Using Documentary Film to Evaluate and Disseminate Community-Based Participatory Research. Family & community health, 39(4), 242–250. https://doi.org/10.1097/FCH.0000000000000120
Fadel N., Stoner A., Berreta K, et al. (2024) A Process Evaluation of a Mobile App for Medical Students Aimed at Increasing Resilience and Decreasing Stigma in Mental Health. Cureus 16(6): e63054. doi:10.7759/cureus.63054
Hicks, S., Duran, B., Wallerstein, N., Avila, M., Belone, L., Lucero, J., Magarati, M., Mainer, E., Martin, D., Muhammad, M., Oetzel, J., Pearson, C., Sahota, P., Simonds, V., Sussman, A., Tafoya, G., & Hat, E. W. (2012). Evaluating community-based participatory research to improve community-partnered science and community health. Progress in community health partnerships : research, education, and action, 6(3), 289–299. https://doi.org/10.1353/cpr.2012.0049
Hussa Farrell, R. (2024). The founder of the Sharpen system spent 20 years as a public health educator, bringing primary prevention programs into schools and communities. During this time she captured over 50,000 post program surveys and documented the 150 most commonly asked questions during Q&A sessions with clinical psychologists, patients with lived expertise and with researchers. More than 4,000 individuals came forward to seek treatment after these sessions. This data was important fundamental groundwork for building the Sharpen system in 2014.
Levy, J., Hussa Farrell, R., Farrell, T., Pish, M., Fassas, J., Reed, E., Hinshaw, S., & Biber, D. (forthcoming). A program evaluation of the Sharpen® Mental Health Literacy (Sharpen® MHL) college course at a southeastern university in the United States. Journal of American College Health.
Rabow, M. W., Goodman, S., Chang, S., Berger, M., & Folkman, S. (2010). Filming the family: a documentary film to educate clinicians about family caregivers of patients with brain tumors. Journal of cancer education : the official journal of the American Association for Cancer Education, 25(2), 242–246. https://doi.org/10.1007/s13187-010-0105-y
Riccardi, M., Pettinicchio, V., Di Pumpo, M., Altamura, G., Nurchis, M. C., Markovic, R., Šagrić, Č., Stojanović, M., Rosi, L., & Damiani, G. (2023). Community-based participatory research to engage disadvantaged communities: Levels of engagement reached and how to increase it. A systematic review. Health policy (Amsterdam, Netherlands), 137, 104905. https://doi.org/10.1016/j.healthpol.2023.104905
Rios, I., Biber, D. (2024). Sharpen Health Care Worker app data. Sharpen data were gathered from de-identified pre- and post- test surveys incorporating OMS-HC, and user acceptability and training feedback metrics. Ongoing evaluation is in process, led by Ileah Rios, MPH and Duke Biber, PhD with anticipated publication of findings in 2026-2027.
Spence, E., Davis, A., Biber, D., Haedicke, A. (2024). Examining the Relationship Between a Digital Mental Health Literacy Program and Student Athlete Mental Health. International Journal of Exercise Science: Conference Proceedings: Vol. 16: Iss. 3, Article 284. Available at: https://digitalcommons.wku.edu/ijesab/vol16/iss3/284
Vangeepuram, N., Fei, K., Goytia, C., Madden, D., Corbie-Smith, G., & Horowitz, C. R. (2023). Community-Based Participatory Research: Insights, Challenges, and Successes From the Perspectives of Frontline Recruiters and Investigators. Journal of Participatory Research Methods, 4(2). https://doi.org/10.35844/001c.77399
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Wallerstein, N., Duran, B., Oetzel, J. G., & Minkler, M. (Eds.). (2018). Community-based participatory research for health: Advancing social and health equity (3rd ed.). Jossey-Bass.
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Zemits, B., Maypilama, L., Wild, K., Mitchell, A., & Rumbold, A. (2015). Moving Beyond "Health Education": Participatory Filmmaking for Cross-Cultural Health Communication. Health communication, 30(12), 1213–1222. https://doi.org/10.1080/10410236.2014.924792