Global Voices, Shared Stories: A Rigorous and Ethical Science of Digital Storytelling in Pain Care

This topical workshop will share findings from the 2025 IASP Collaborative Research Grant: ‘Global Narratives in Pain: Bridging Science, Storytelling, and Healing’. The grant brought together leading basic and clinical pain scientists with lived experience partners across South Africa (Dr Madden), New Zealand (Dr Devan), Australia (Drs Braithwaite, Colaguiri), the UK (Dr Heathcote) and the US (Ms Belton) to create the world’s first conceptual model (mechanistic and ethical framework) for how digital stories can improve pain management globally.

The workshop will commence with a pre-recorded introduction from Joletta Belton (lived experience partner, GAPPA) who has significantly advanced the study of pain by advocating for genuine lived experience partnerships. She will share why stories matter.

Chair: Dr Madden (PhD) is an Associate Professor and physiotherapist with over 15 years of clinical experience in persistent pain. She conducts pioneering experimental research on pain mechanisms in African communities where storytelling is a deeply valued path to behavior change. She will introduce the conceptual model and summarize how each speaker’s funded research co-creating and rigorously testing digital stories across diverse pain conditions and contexts have contributed to the model.

Speaker 1: Dr Braithwaite (PhD) is a physiotherapy-trained early-career researcher who has led exemplary co-design work with people with osteoarthritis. Her work revealed the patient-identified need for storytelling in pain management, and she co-designed brief videos sharing lived experience stories to inspire others to try evidence-based management. She will present a randomized experiment investigating the effects of a digital story (versus standard information) on diet-related management intentions. These data informed the conceptual model with novel pain-specific evidence, including how to deliver challenging information in non-stigmatizing ways.

Speaker 2: Dr Heathcote (PhD) is an Associate Professor and psychologist who pioneered the integration of digital stories for pain management in cancer survivors. She will present results from her £3.7million research program, including a multisite randomized controlled trial testing a story-based intervention she co-created with young cancer survivors, clinicians, and documentary filmmakers to shape adaptive ‘body mindsets’ and improve quality of life and pain after childhood cancer. Her work informed the conceptual model in ethically capturing and sharing digital stories with a particularly vulnerable population, and how digital stories could bridge the gap between in-person and digital healthcare.

Speakers 3+4: Dr Devan (PhD) is a physiotherapy-trained academic and an emerging leader in culturally-responsive pain management interventions. Ms Monro (PhD Candidate) is a Māori researcher studying the role of Indigenous knowledge in healthcare, informed by her lived experience of pain, philosophical perspective, and cross-cultural lens. They will co-present their community-based participatory storytelling methods to co-design digital stories with Māori (Indigenous community of New Zealand) for a clinical tool to facilitate opioid tapering conversations. This work informed the conceptual model with cultural, equity, and logistical considerations for digital pain stories.

Chair: Dr Madden will then summarize the conceptual model, describing the cognitive, affective, behavioral, and sociocultural mechanisms through which stories improve pain outcomes. Attendees will be encouraged to suggest further potential mechanisms and refine the conceptual model via facilitated discussion and Slido.