Fifteenth International Conference on Design Principles & Practices

Abstract

Technologies profoundly impact aspects of human life including healthcare and health research. The dramatic growth of health-related technologies, however, challenges health researchers and clinicians not only to adapt to technological change, but to participate in unfamiliar design and development processes. With the Pain Studies Lab, the Arthritis Research Centre (ARC) and its patient-partners collaborated in a co-creation design workshop to explore a new research domain: “the burden of symptoms.” Contrary to the traditional view of symptoms as signs that help identify a disease, the collaborators are interested in how symptoms (e.g., pain) may affect individuals’ biopsychosocial lived experiences, quality of life and ability to work. The collaborators used validated health instruments and emerging design methods to explore initial information-gathering. Patient-partners, health researchers/clinicians, designers, and technologists all participated as citizens who contributed anonymized information. This collaborative involvement was crucial for needs assessments as well as for creating a common ground in understanding the necessities of both qualitative and evidence-based information. Outcomes of this workshop led to the specification of four key guiding principles for the design of the platform: 1) personalized experience, 2) physical feelings and limitations, 3) interconnectedness of symptoms, and 4) emotional burdens of symptoms. These needs demonstrated the high level of complexity required by the platform, and helped identify needs not only of the citizens who will contribute information, but also of the health researchers/clinicians who use that information. Consequently, the team refined their approaches, embodied in a prototype currently being assessed for privacy, security, inclusivity, and usability.