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

查看并分享重要内容：针对多种慢性病患者的个人健康图书馆

• 批准号: 9767285
• 负责人: JAMES D. RALSTON
• 金额: $ 35.04万
• 依托单位: KAISER FOUNDATION RESEARCH INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-07 至 2021-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9767285
• 关键词: Adverse drug event; Awareness; Blood Glucose; Caring; Chronic; Chronic Disease; Conflict (Psychology); Coronary Arteriosclerosis; Data; Data Sources; Degenerative polyarthritis; Diabetes Mellitus; Diet; Disease; Electronic Health Record; Elements; Evaluation; Face; Family; Family Caregiver; Glycosylated hemoglobin A; Health; Health Status; Health Status Indicators; Home environment; Human; Imagery; Individual; Insulin; Interview; Label; Left; Libraries; Life Style; Link; Love; Medical; Mental Depression; Methods; Monitor; Nature; Outcome; Outpatients; Participant; Patients; Personal Satisfaction; Pharmaceutical Preparations; Physically Handicapped; Process; Provider; Quality of life; Reading; Retinal Diseases; Role; Self Determination; Self Management; Self Perception; Technology; Test Result; Testing; Trust; Vision; Work; base; care systems; collaborative care; data visualization; design; experience; health information technology; heuristics; improved; innovation; mortality; multiple chronic conditions; older patient; preference; preservation; prototype; theories; tool; treatment choice

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.

总结/摘要 目前的护理系统不能满足患有多种慢性疾病的老年人的需要。 与没有多重恐惧症的人相比，他们接受的医疗建议和经验更相互矛盾 生活质量更差，身体残疾更多，药物不良事件更多，死亡率更高。他们往往面临 相互竞争和冲突的护理需求。最好的护理与个人对健康的个人价值观相一致 和幸福不幸的是，患有多种慢性疾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 提供者和家庭护理人员帮助管理他们的慢性疾病。多个慢性 条件需要工具来帮助他们定义个人价值观，并将其应用于对慢性病的选择 管理 在这个项目中，慢性病护理、健康信息技术和以人为本的设计方面的专家将 为患有多种慢性疾病的个人建立和测试个人健康图书馆， 个人价值观和慢性病管理之间的联系。我们的方法重建健康 信息对个人的需要和能力与多种慢性疾病。它从 以疾病为重点的信息和护理，以支持对个人最重要的认识。我们 在我们为这些人的健康和福祉所做的个人价值观的初步工作的基础上再接再厉。通过 以人为本的设计过程吸引个人，我们将设计和测试个人健康库， 个人数据的交互式可视化，旨在增强对个人数据之间联系的自我意识 价值观和慢性病护理。有关个人健康和福祉价值观的数据将直接从 个人包括家庭照片。慢性病自我管理的数据将来自 电子健康记录。病人控制和管理的互动个人健康图书馆将是 考虑到个人价值、照片和电子健康相结合的潜在敏感性， 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作为一个重要的组成部分，专注于什么最重要的， 在患有多种慢性病的个人中进行自我管理和护理。