Dr. Rupa Valdez (Public Health Sciences), Dr. Steve Patek (Systems and Information Engineering), Dr. Mark Deboer (Pediatric Endocrinology), and Dr. Daniel Chernavvsky (Psychiatry and Neurobehavioral Sciences) are PIs on a recently funded R01 from the National Library of Medicine. The purpose of this study is to develop and assess a new approach to self-management that recognizes that many patients with chronic conditions must manage their condition continuously and often do so within a social context. The project is titled “CloudConnect: Consumer Health IT for Enhanced Treatment of Chronic Illness”.
Abstract: The purpose of this study is to develop and assess a new approach to self-management that recognizes that many patients with chronic conditions must manage their condition continuously and often do so within a social context. As care shifts to home- and community-based settings, multiple forms of consumer health information technology (IT) are being developed to support patients with their self-management responsibilities. In particular, remote monitoring systems—in which clinically relevant data are captured, analyzed, and converted into medically relevant information—carry potential for use in multiple chronic diseases that require constant oversight. Furthermore, consumer health IT is being advanced that is responsive to the fact that self- management rarely occurs in isolation; rather, patients often rely on others including a primary informal caregiver. Therefore, there is a need to create and evaluate approaches to self- management that integrate consumer health IT interventions facilitating continuous monitoring and both individual and group decision-making. This proposal seeks to refine and assess such an approach to self-management called CloudConnect, with two specific aims: 1) explicate patient and informal caregiver needs and preferences relevant to the technology core of this self-management approach and 2) evaluate the impact of this self-management approach on engagement and clinical outcomes. The proposed research addresses questions that relate to the design and performance of a self-management approach that integrates remote monitoring systems, decision support systems, and health information communication systems, with a focus on dyads of adolescents with Type 1 Diabetes and their local care givers. The first of two studies associated with this proposal is a field study that (A) assesses patients’ and primary informal caregivers’ needs/preferences for the technology core of Cloud Connect, and (B) generates design features for the technology core of CloudConnect that allow customization based on this input. The second study is a randomized control trial that assesses CloudConnect in terms of patient engagement, dyad engagement, and clinical outcomes as well as the relationships among these outcome measures for adolescents with diabetes. Ultimately, we expect to address the informatics challenge of determining how to design information technology that improves engagement and clinical outcomes for patients who require continuous monitoring and who engage an informal primary caregiver in self-management outside clinical settings.