Understanding Patient and Caregiver Work to Support Health Care System Reliability and Quality
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Patients and their families face many challenges navigating and managing their care within hospitals and other healthcare environments. Outside of the stress and anxiety linked to a health crisis, patient and their families must also cope with significant information and communication challenges. The expansion of information generated by labs, tests, and specialist assessments creates greater complexity and gaps in care delivery and coordination than has existed in the past. With increased complexity, patients and families are exposed to risk of adverse care-related events that can negatively affect their health and well-being. Researchers have investigated these negative events and point to communication failure as one of the primary reasons for these occurrences. In this context, the field of Human-Computer Interaction provides useful frameworks and research methods to understand communication failures related to patient, family, and clinician interaction around health care data. In this dissertation, I address the concept of patient participation in health care information manage-ment from a diverse range of care settings—hospitals, clinics, homes—and different medical scenarios including chronic, acute, and surgical cases. My research approach considers the design of systems through a sociotechnical macroergonomic framework known for understanding the structures, process-es, and outcomes of the work of health care professionals, patients, and families in regard to patient safety reporting. In addition, I employ different mixed methodologies to explore the information needs and artifacts within a clinical environment to support patient’s awareness of their care. In the first study, I consider the work that patients with chronic conditions perform outside of the clinic to reduce errors and ensure reliable self-care. In my second study, I explore the information workspace of patients and families in the hospital. In the third study, I demonstrate the use of Q methodology to elicit a diverse mix of attitudes of patients and caregivers regarding their communication needs in the hospital. In the final study, I explore the perspective of caregiver involvement in monitoring signs of delirium in the hospital. The notion of increased patient participation in healthcare is a growing trend in the industry. However, as I review in the related literature below, researchers are just beginning to conduct studies that explain patient-centered needs as it relates to care quality from an informatics perspective. With this work, I provide a formative approach to addressing the care and communication challenges of healthcare from a patient perspective. This area of study can help medical systems to improve the overall patient experience and incorporate patient and family member contributions to clinical care information management.