Designing Technologies to Support Patient Engagement in the Hospital

Abstract

Patient engagement in the hospital affects health outcomes and satisfaction with care. Furthermore, granting patients access to information about their care and encouraging them to voice their concerns has the potential to help patients prevent medical errors. Yet hospitalized patients often face enormous difficulties in engaging with their care. Moreover, much of the work examining the nature of and support for patient engagement has focused on the outpatient and home contexts, outside of the hospital. In this dissertation, I examine the nature of patient engagement in the hospital. I demonstrate that patients, as well as their caregivers (family and friends who help the patient in the hospital), often seek to actively engage with their care in a variety of ways, including by monitoring the patient’s condition, jointly making decisions about care with clinicians, and even acting as a nexus point for members of the clinical team to connect with each other. I illustrate individual variation in the degree to which patients and caregivers desire or feel able to engage with their care. I discuss factors which affect patients’ and caregivers’ willingness to engage in their care, both in terms of general engagement and specifically in terms of their safety behaviors. For the latter, I explore specifically how the patient-clinician relationship encourages or discourages patients and caregivers from performing behaviors that could increase their safety in the hospital. In addition, I explore how technologies should be designed to support patient engagement. First, I discuss the design of technologies to support self-tracking of health and care in the hospital—an important part of engagement that helps patients and caregivers monitor the patient’s health and make decisions about care. Second, I discuss how technologies should be designed to encourage patients and caregivers to speak up about issues in their care. The contributions of this work illustrate how we can design technologies to improve the safety and quality of hospital care nationwide.