Play the Pain: A Digital Strategy for Play-Oriented Research and Action

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.

Toward a digital citizen lab for capturing data about alternative ways of self-managing chronic pain: An attitudinal user study

“…Excluding comments that offered specifics about type of pain and work status, we reviewed all comments about the usefulness of apps (19), data collection (11), improvement to features (23), reasons for using apps (11), concerns (6), and how best to express pain (12). We list themes that emerged from comments (all made by respondents who identified as female), that better illustrate which factors may motivate participation in our digital citizen lab, and which may contribute to technostress.…”

“…Research that we present in this article is part of a larger project to develop a health-related information and communication (ICT) platform aiming to involve PwPPs in studying two important issues: first, the influence of cultural, psychosocial, and environmental context in which one experiences pain; second, a knowledgebase from individuals' personal experiences of coping with CP outside clinical frameworks ( 6 ). Throughout this paper, “alternative” refers to any methods that are not within the mainstream medical practice and not covered by standard insurance plans.…”

“…In the context of the 2019 Task Force priorities, we proposed a Digital Strategy for Play Oriented Research and Action (DiSPORA) ( 6 ). In conditions as complex as chronic pain, where clinical interventions have not provided satisfactory relief, those affected by CP may try ( play with) alternative choices for which sufficient clinical evidence is not available.…”

Lives Penciled in, the Reality of Chronic Health Conditions and Trauma: Reflexivity, Health, and Shadowed Identities

“…Living with pain and cancer means establishing a new self-determined sensibility of what personal health feels like. We still need to establish when our health shifts to illness, just differently ( 1 ).…”

Editorial: Qualitative pain research: Capturing and integrating cultural, social and linguistic data

“…To address this shortcoming, we focused on Cultural, Social and Linguistic aspects of qualitative pain research in this special issue, building upon our own perspectives as both qualitative and quantitative pain researchers [e.g., (14)(15)(16)]. The following themes emerged within this collection:…”