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

摘要/摘要 目前的护理系统不能满足患有多种慢性病的老年人的需要。 与没有多发病的人相比，他们得到的医疗建议和经历更具矛盾性。 更差的生活质量，更多的身体残疾，更多的不良药物事件，以及更高的死亡率。他们经常面对 相互竞争和相互冲突的护理需求。最好的护理符合个人对健康的价值观 和幸福感。不幸的是，患有多种慢性病的人往往不知道他们的 个人价值观可能会影响他们的治疗选择。个人价值观可以被排除在耐心的讨论之外 与帮助他们管理慢性病的提供者和家庭照顾者在一起。多发性慢性阻塞性肺疾病 疾病需要工具来帮助他们定义个人价值观，并将其应用于慢性病的选择 管理层。 在这个项目中，慢性病护理、健康信息技术和以人为中心的设计方面的专家将 为患有多种慢性病的个人构建和测试个人健康库 个人价值观与慢性病管理之间的联系。我们的方法重建了健康 关于患有多种慢性病的个人的需求和能力的信息。它从 以疾病为重点的信息和关怀，以支持对个人最重要的认识。我们 以我们在这些人的健康和幸福的个人价值观方面的初步工作为基础。通过一个 以人为本的设计过程，吸引个人，我们将设计和测试一个个人健康图书馆 个人数据的交互式可视化，旨在增强对相互之间联系的自我意识 价值观和慢性病护理。关于个人健康和幸福价值观的数据将直接从 个人，包括家庭照片。有关慢性病自我管理的数据将来自 电子健康记录。互动个人健康图书馆的患者控制和管理将是 考虑到将个人价值观、照片和电子健康结合在一起的潜在敏感性质，这是必不可少的 记录数据；我们的设计过程将引出有关信息控制的偏好和要求 参与者。我们设想这个个人健康图书馆是关注最重要的东西的重要组成部分 患有多种慢性病的个人的自我管理和护理。

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.