Kent's conducted this project as his dissertation entitled "Information & the Cancer Experience: A Study of Patient Work in Cancer Care." (see abstract below) under the direction of a wonderful dissertation committee including Dr. Wanda Pratt (Chair), Dr. Julie Gralow, Dr. Raya Fidel, and Dr. Sherrilynne Fuller.
In a distributed system of outpatient cancer care, patients’ work remains invisible because it spans multiple clinicians, transcends disciplinary boundaries, and extends beyond treatment centers into personal spaces such as the home and workplace. Although little is known about patients’ work, it is essential to achieve positive health outcomes. If patients fail to plan, remember, communicate, or coordinate effectively their cancer care may be compromised. Despite the importance of patients’ work, we lack empirical evidence to inform new strategies to support this work. To address this problem, I conducted an exploratory field study to examine patients’ in-situ work during cancer care. Using the lens of patient work, I describe the core work that patients face as defined by the structure of the cancer care system and the expectations of clinicians. I extend this analysis by applying the personal work lens to demonstrate how patients manage their work-as-a-patient in the context of their daily lives. Specifically, I demonstrate how work during cancer care is a blend of personal and clinical objectives, procedures, and information practices. I further extend this analysis by applying the distributed work lens to capture how patients operate in the context of distributed work with clinicians, family and friends. Six design-oriented findings emerged from this research. To conduct their patient work, personal work, and distributed work effectively, patients: (1) organized, recalled, and retrieved information using six classes of strategies (2) manipulated information into functional forms via bundling and annotating strategies (3) accessed and used information in diverse personal contexts including the home and workplace (4) managed their cancer information in the context of other personal information (5) leveraged personal social networks to reduce their workload and expand their resources and (6) required strategies to coordinate, cooperate, and collaborate with distributed clinical actors in their care.