論文アブストラクト： We report the process used to create artefacts for self-reporting Parkinson's Disease symptoms. Our premise was that a technology-based approach would provide participants with an effective, flexible, and resilient technique. After testing four prototypes using Bluetooth, NFC, and a microcontroller we accomplished almost full compliance and high acceptance using a paper diary to track day-to-day fluctuations over 49 days. This diary is tailored to each patient's condition, does not require any handwriting, allows for implicit reminders, provides recording flexibility, and its answers can be encoded automatically. We share five design implications for future Parkinson's self-reporting artefacts: reduce participant completion demand, design to offset the effect of tremor on input, enable implicit reminders, design for positive and negative consequences of increased awareness of symptoms, and consider the effects of handwritten notes in compliance, encoding burden, and data quality.
論文アブストラクト： There is a growing emphasis on designing with people with diverse health experiences rather than designing for them. Yet, collaborative design becomes difficult when working with individuals with health conditions (e.g., stroke, cancer, abuse, depression) that affect their ability or willingness to engage alongside researchers and verbally express themselves. The present paper analyzes how the clinical practice of art therapy engages these individuals in co-creative, visual expression of ideas, thoughts, and experiences. Drawing on interviews with 22 art therapists and over two years of field work in a clinical setting, we detail how art therapists view making as expression for people with complex communication needs. Under this view, we argue that art therapy practice can inspire collaborative design engagements by understanding materials as language, creating space for expression, and sustaining expressions in a broader context. We discuss practical and ethical implications for design work involving individuals with complex communication needs.
論文アブストラクト： Teens with complex chronic illnesses have difficulty understanding and articulating symptoms such as pain and emotional distress. Yet, symptom communication plays a central role in clinical care and illness management. To understand how design can help overcome these challenges, we created a visual library of 72 sketched illustrations, informed by the Observations of Daily Living framework along with insights from 11 clinician interviews. We utilized our library with storyboarding techniques, free-form sketching, and interviews, in co-design sessions with 13 pairs of chronically-ill teens and their parents. We found that teens depicted symptoms as being interwoven with narratives of personal and social identity. Teens and parents were enthusiastic about collaboratively-generated, interactive storyboards as a tracking and communication mechanism, and suggested three ways in which they could aid in communication and coordination with informal and formal caregivers. In this paper, we detail these findings, to guide the design of tools for symptom-tracking and incorporation of patient-generated data into pediatric care.
論文アブストラクト： Patient-generated data, such as data from wearable fitness trackers and smartphone apps, are viewed as a valuable information source towards personalised healthcare. However, studies in specific clinical settings have revealed diverse barriers to their effective use. In this paper, we address the following question: are there barriers prevalent across distinct workflows in clinical settings to using patient-generated data? We conducted a two-part investigation: a literature review of studies identifying such barriers; and interviews with clinical specialists across multiple roles, including emergency care, cardiology, mental health, and general practice. We identify common barriers in a six-stage workflow model of aligning patient and clinician objectives, judging data quality, evaluating data utility, rearranging data into a clinical format, interpreting data, and deciding on a plan or action. This workflow establishes common ground for HCI practitioners and researchers to explore solutions to improving the use of patient-generated data in clinical practices.