Digital Storytelling (DST) in Health Research: Amplifying Patient Voices to Improve Person-Centred Care Passed
Thursday May 16, 2024 10:00 - 10:15 G1
Moderator: Emma Forsgren
Presenters: Maria J. Santana, Paul Fairie, Sadia Ahmed, Sandra Zelinsky
Track: Art, Media, and Performance
Stories and storytelling are powerful tools, helping us to make sense of our thoughts, feelings, and experiences, providing a deeper understanding of our environment, interactions, and values. This presentation explores the use of Digital Storytelling (DST) in health research, positioning it as an innovative Community-Based Participatory Research (CBPR) method that significantly enhances the involvement of individuals with lived experiences. As a CBPR method, DST serves as an innovative method to amplify the voices of underrepresented populations and people with lived experiences in healthcare, providing meaningful engagement with those who value storytelling as a way of knowing and understanding. Digital stories are short (3-5 minutes), first person video narratives created with the combination of images, video, narration, and music, offering a compelling and accessible medium for expression. The adoption of DST by academics across disciplines, including health research, over the past two decades underscores its versatility and impact. This presentation introduces the audience to the 7-step methodology (owning your insights, owning your emotions, finding the moment, seeing your story, hearing your story, assembling your story, and sharing your story) developed by Story Center, US (Lambert, J., 2020, Digital Storytelling: Story Work for Urgent Time, Berkeley, CA.: Digital Diner Press) and the inherent benefits and challenges of DST in the context of health research. Moreover, the presentation showcases healthcare-themed DST workshops and patient digital stories, illustrating how DSTs can serve as a powerful knowledge translation tool to enhance person-centred care. By offering tangible examples and insights, we aim to demonstrate the potential of DST in bridging the gap between research findings and meaningful, patient-centric outcomes, ultimately contributing to the advancement of person-centred care.
Seminar type
Pre-recorded + On-site
Lecture type
Art
Conference
GCPCC
Authors
Sandra Zelinsky, Sadia Ahmed, Maria Santana, Paul Fairie
Lecturers
Emma Forsgren Moderator
Researcher
University of Gothenburg
Emma has as Master of Science in Speech and Language Pathology and is a Doctor of Philosophy in Medical Science.
Currently employed as a Researcher and Project lead for education and utilisation of research within Gothenburg Centre for Person-Centred Care (GPCC), at the Institute of Health and Care Sciences, Sahlgrenska academy, University of Gothenburg.
Maria J. Santana Presenter
Cumming School of Medicine, University of Calgary
Dr. Maria J. Santana is a health services researcher, patient and family-centred care scientist, Professor in the departments of Pediatrics and Community Health Sciences at the Cumming School of Medicine, University of Calgary, Canada.
Dr. Santana has received training in clinical pharmacy (BPharm, MPharm, London School of Pharmacy, UK, Universidad La Laguna, Spain), public health and clinical epidemiology (PhD, University of Alberta, Canada).
She is the provincial director, Patient Engagement for the Alberta Strategy for Patient-oriented Research (https://absporu.ca/patient-engagement-2/ ). She is the principal investigator for the Person-centred Care Research Team, https://cumming.ucalgary.ca/research/person-centred-care and the academic director of the Patient and Community Engagement in Research, PaCER, https://www.ucalgary.ca/patient-community-engagement-research .
In 2023, she received the President Award by the International Society for Quality of Life Research. Recently, she has collaborated in three major international initiatives: World Health Organization - Patient Engagement: Technical Series on Safer Primary Care; Pan-American Health Organization – World Hypertension League Hypertension Monitoring and Evaluation Framework to aid Hypertension Control Programs; and the International Consortium for Health Outcome Measurement Adult Diabetes. She is a scientific advisor for the Gothenburg Person-centred Centre, University of Gothenburg, Sweden.
Paul Fairie Presenter
Sadia Ahmed Presenter
Sandra Zelinsky Presenter
Patient Engagement Researcher
University of Calgary
Sandra is a graduate of the Patient and Community Engagement Research (PaCER) program from the University of Calgary, and she is a trained Digital Storytelling facilitator from The Story Center, USA. She believes in the importance of bringing the lived experience expertise to health research teams and has seen the direct impact on the conduct and outputs of research. She helps to support research teams in working together in patient engagement and patient-oriented research for the AbSPORU Patient Engagement Team and IMAGINE SPOR Chronic Disease Network. She also conducts qualitative patient-led research with an interest in arts-based approaches, specifically Digital Storytelling. It is her lived experiences as a person living with Crohn’s disease and as a breast cancer survivor that motivates her to work collaboratively in health research.