Stanford University, Department of Pediatrics, Division of Rheumatology, 700 Welch Road, Suite 301, Palo Alto, CA 94304, USA.
Johnson & Johnson Corporation, Comprehensive Care, Global Strategic Design Office, 601 West 26th Street, Suite 1601, New York, NY 10001, USA; Art Center College of Design, South Campus, 950 South Raymond Avenue, Pasadena, CA 91105, USA.
J Biomed Inform. 2010 Oct;43(5 Suppl):S9-S12. doi: 10.1016/j.jbi.2010.05.008.
Living Profiles is a health media platform in development that aggregates multiple data flows to help teens with special healthcare needs (SHCN), particularly with regard to self-management and independence. A teen-oriented personal health record (PHR) incorporates typical teen behaviors and attitudes about health and wellness, encompasses how teens perceive and convey quality of life, and aligns with data related to their chronic medical condition. We have conceived a secure personalized user interface called the Quality of Life Timeline, which will assist with the transition from pediatric care to an adult provider through modules that include a mood meter, reminder device, and teleport medicine. With this personalized PHR, teens with SHCN can better understand their condition and its effects on daily activities and life goals and vice versa; additionally, use of this PHR allows for better information sharing and communication between providers and patients. The use of a teen-oriented tool such as Living Profiles can impact teens' overall quality of life and disease self-management, important attributes for a successful transition program.
生活档案是一个正在开发中的健康媒体平台，它聚合了多个数据流，旨在帮助有特殊医疗需求的青少年（SHCN），特别是在自我管理和独立方面。面向青少年的个人健康记录（PHR）结合了青少年对健康和健康的典型行为和态度，涵盖了他们如何感知和传达生活质量，并与他们慢性疾病相关的数据相匹配。我们设计了一个名为“生活质量时间线”的安全个性化用户界面，该界面将通过包括情绪计、提醒设备和传送药物在内的模块，帮助青少年从儿科护理过渡到成人提供者。有了这个个性化的 PHR，患有 SHCN 的青少年可以更好地了解自己的病情及其对日常活动和生活目标的影响，反之亦然；此外，使用这种 PHR 可以促进提供者和患者之间更好的信息共享和沟通。使用像生活档案这样面向青少年的工具可以影响青少年的整体生活质量和疾病自我管理，这是成功过渡计划的重要属性。
