Abstract
The value of understanding patients' illness experience and social contexts for advancing medicine and clinical care is widely acknowledged. However, methodologies for rigorous and inclusive data gathering and integrative analysis of biomedical, cultural, and social factors are limited. In this paper, we propose a digital strategy for large-scale qualitative health research, using play (as a state of being, a communication mode or context, and a set of imaginative, expressive, and game-like activities) as a research method for recursive learning and action planning. Our proposal builds on Gregory Bateson's cybernetic approach to knowledge production. Using chronic pain as an example, we show how pragmatic, structural and cultural constraints that define the relationship of patients to the healthcare system can give rise to conflicted messaging that impedes inclusive health research. We then review existing literature to illustrate how different types of play including games, chatbots, virtual worlds, and creative art making can contribute to research in chronic pain. Inspired by Frederick Steier's application of Bateson's theory to designing a science museum, we propose DiSPORA (Digital Strategy for Play-Oriented Research and Action), a virtual citizen science laboratory which provides a framework for delivering health information, tools for play-based experimentation, and data collection capacity, but is flexible in allowing participants to choose the mode and the extent of their interaction. Combined with other data management platforms used in epidemiological studies of neuropsychiatric illness, DiSPORA offers a tool for large-scale qualitative research, digital phenotyping, and advancing personalized medicine.
Highlights
Chronic Pain: The Limits of Biomedical ModelsChronic persistent pain (CP) is a leading cause of disability worldwide [1,2,3,4,5]
Can we study pain by shedding on it the light of play?” Discussions were stimulated by playful activities that were facilitated by creative arts therapists, as well as by presentations from neuropsychology students on nonpharmacological pain research, and performances by artists
The paper is structured in three parts: First, we outline a theoretical framework for play as a tool for pain research; we present a working definition of play, illustrated with examples of different types of play-oriented activities that can be implemented in a digital framework for pain research; we provide a critical overview of how digital playgrounds can be implemented to be maximally inclusive and adaptable
Summary
Chronic persistent pain (CP) is a leading cause of disability worldwide [1,2,3,4,5]. Medical science has had limited success in treating many forms of CP and there is increasing recognition that responding to CP requires more than purely biomedical models [6, 7]. There are several modes of incorporating play in knowledge creation used in science museums that can be implemented in a digital health research “laboratory.” A virtual simulation of a “science museum” in digital media that simulates the dynamics of exploring exhibits can provide flexible ways for participants to engage and interact with various exhibits on “display.” These exhibits can provide specific modes of playful interaction that serve therapeutic, educational, creative, and experimental objectives These exhibits can invite critical reflection on specific issues or questions In a meta-analysis of 29 qualitative studies investigating the experiences of patients in patient-centered care models, Winsor et al found that patients’ level of participation was linked to support systems that strengthened their skills
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