Seeing and Sharing What Matters: Personal Health Libraries for Individuals with Multiple Chronic Conditions

摘要/文摘

Summary/Abstract Current systems of care are not meeting the needs of older individuals with multiple chronic health conditions. Compared to individuals without multimorbidity, they receive more conflicting medical advice and experience worse quality of life, more physical disability, more adverse drug events, and higher mortality. They often face competing and conflicting care demands. The best care aligns with individuals' personal values about health and wellbeing. Unfortunately, individuals with multiple chronic conditions are often unaware of how their personal values could impact their treatment choices. Personal values can be left out of patient discussions with providers and family caregivers who help manage their chronic illnesses. Patients with multiple chronic conditions need tools to help them define personal values and apply them to choices about chronic illness management. In this project, experts in chronic disease care, health information technology, and human-centered design will build and test a personal health library for individuals with multiple chronic conditions that illuminates connections between personal values and chronic illness management. Our approach restructures health information towards the needs and capabilities of individuals with multiple chronic conditions. It moves from disease-focused information and care to supporting an awareness of what matters most to individuals. We build on our preliminary work in personal values for health and wellbeing in these individuals. Through a human-centered design process engaging individuals, we will design and test a personal health library with interactive visualizations of personal data aimed at enhancing self-awareness of the connections among values and chronic illness care. Data on personal values for health and wellbeing will be elicited directly from individuals including home photographs. Data on self-management of chronic illness will come from the electronic health record. Patient control and stewardship of the interactive personal health library will be essential, given the potentially sensitive nature of combining personal values, photos and electronic health record data; our design process will elicit preferences and requirements about information control from participants. We envision this personal health library as an essential part of focusing on what matters most for self-management and care among individuals with multiple chronic conditions.