Principles for Designing an mHealth App for Participatory Research and Management of Chronic Pain

Holowka, Eileen Mary; Woods, Sandra L.; Pahayahay, Amber; Roy, Mathieu; Khalili-Mahani, Najmeh

doi:10.1007/978-3-030-77820-0_5

Cited by 4 publications

(4 citation statements)

References 48 publications

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“…In line with DiSPORA, as proof of principle, we have recently developed an app ( PlaythePain.com ) to examine the affordances of playful, creative and social activities in a digital citizen laboratory ( 86 ). The app is designed to serve as a participatory citizen science laboratory, and respect individual differences in focus, interests, modes of self-evaluation, self-expression, and self-care.…”

Section: Dispora: a Digital Strategy For Play-oriented Research And Actionmentioning

confidence: 99%

“…We brought together an interdisciplinary team of clinicians, social scientists, bioethicists, designers, and computer scientists, with support from an intersectoral funding opportunity in the Province of Quebec (Canada), to develop an innovative ICT framework for play-oriented pain research. We held a 2-day public workshop in October 2019, bringing together research team members, clinicians, and individuals with lived experience of chronic pain ( 86 , 87 ). The workshop was held at Concordia University's 4TH SPACE, an open gallery designed to showcase research and seek engagement from the public who were invited with the following message: “ We are scientists, artists, therapists.…”

Section: Introductionmentioning

confidence: 99%

“…Using modes of play can afford people some distance from the suffering associated with their health problem, while mobilizing both coping strategies and social connection to others. This theoretical framework has evolved in tandem with development of a limited prototype in the form of a bilingual mobile phone application, PlayThePain ( 86 ).…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2021

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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.

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Section: Dispora: a Digital Strategy For Play-oriented Research And Actionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2021

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“…Contemporary design practices in eHealth systems for chronic pain suggest how cultural and psychosocial factors should be tackled using a participatory action-research model [7]. In this preliminary exploratory study, we began by conducting a critical evaluation of the project through the lens of an ethical stakeholder analysis.…”

Section: Introductionmentioning

confidence: 99%

Sound of Care: Towards a Co-Operative AI Digital Pain Companion to Support People with Chronic Primary Pain

Del Sette,

Carnes,

Saitis

2023

Computer Supported Cooperative Work and Social Computing

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This work investigates the role of sound and technology in the everyday lives of people with chronic primary pain. Our primary goal was to inform the first participatory design workshop of Sound of Care, a new eHealth system for pain self-management. We used an ethical stakeholder analysis to inform a round of exploratory interviews, run with 8 participants including people with chronic primary pain, carers, and healthcare workers. We found that sound and technology serve as important but often unstructured tool, helping with distraction, mood regulation and sleep. The experience of pain and musical preferences are highly personal, and communicating or understanding pain can be challenging, even within family members. To address the gaps in current chronic pain self-management care, we propose the use a sound-based AI-driven system, a Digital Pain Companion, using sonification to create a shared decision-making space, enhancing agency over treatment in a co-operative care environment.CCS Concepts: • Human-centered computing → Human computer interaction (HCI); Interactive systems and tools; Soundbased input / output; • Computing methodologies → Artificial intelligence.

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Designing a conversational agent for supporting data exploration in citizen science

Stein,

Teubner,

Morana

2024

Electron Markets

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Data is ubiquitous in today’s digitized society. However, access to and literacy in handling data plays a pivotal role in determining who can benefit from it and who can use—or potentially misuse—it. To combat inequalities and address issues such as misinformation, it is essential to enable citizens to effectively access and understand data within their local ecosystems. To address this challenge, we focus on the case of citizen science and propose using a conversational agent to support data exploration and lower barriers to citizen engagement in research projects. Using a design science research approach, we derive design principles and develop a prototypical artifact. Moreover, we conduct an experimental evaluation, demonstrating strong interest among citizens to participate in scientific data analysis and that conversational agents hold great potential in increasing data literacy.

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Principles for Designing an mHealth App for Participatory Research and Management of Chronic Pain

Cited by 4 publications

References 48 publications

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

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

Sound of Care: Towards a Co-Operative AI Digital Pain Companion to Support People with Chronic Primary Pain

Designing a conversational agent for supporting data exploration in citizen science

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