Designing to Account for Patients’ Personal Values in Collaborative Care for Multiple Chronic Conditions
Berry, Andrew B. L.
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In this dissertation I reexamine the nature of human values and the relationship between values and design by reporting on the VITAL project—Valuing Important Things in Active Lives. This project aimed to improve health care for people with multiple chronic conditions (MCC) by facilitating shared understanding between patients and their healthcare providers about patients’ personal values. Personal values may be anything a person with MCC considers important for their well-being and health: abilities (e.g., mobility, mental sharpness), activities (e.g., gardening, walking the dogs, exercising), emotions (e.g., serenity, joy, relief), possessions (e.g., photographs, a home, a car), principles (e.g., independence, faith, honesty), and relationships with family, friends, co-workers, or others. To understand opportunities for designers to support shared understanding of patients’ personal values, I examined the collaborative practices involved in MCC care. I focused on the practices of three key actors: 1) people with MCC, 2) informal caregivers (i.e., anyone who helps the patient care for their health, including the patient’s spouse, family members, or close friends), and 3) healthcare providers (e.g., primary care physicians, medical assistants, and registered nurses). Through a series of field studies and co-design activities involving these actors, I discovered how patients’ personal values shaped collaborative MCC care practices and identified barriers that hindered shared understanding of patients’ personal values. This has generated foundational, intermediate-level design knowledge that clarifies how products, services, and systems could be designed to address these barriers. Reflecting on these findings also provided an opportunity to rework and extend scholarship on the nature of human values and the relationship between values and design. I discuss the utility of the concept of personal values in the VITAL project, introduce the theoretical perspective of designing for moral action, and discuss how this perspective can be useful for guiding future research and design efforts.