Managing Health Information in Your Life

由于临床医生被迫减少与患者在一起的时间， 随着医疗服务水平的不断提高，病人在医疗保健中的作用也越来越突出。然而， 现有的信息工具可支持患者发挥这一积极作用。特别是，患者通常必须协调他们的 跨多个临床医生的医疗保健，学习新的健康术语，做出治疗选择，管理他们的 家庭护理，跟踪保险福利等，同时，患者正在努力保持他们的正常 职业和个人生活，但对他们的强烈信息管理要求， 干扰所有这些活动。对患者的这种信息管理工作知之甚少，但 这些知识必须是开发患者所需工具的第一步， 作用本研究的长期目标是了解病人的信息管理工作 并开发新技术来支持这项工作。具体而言，我们建议（1）建立一个模型， 病人的个人健康信息管理工作，（2）开发新的技术，支持病人在 （3）评估我们的新技术在帮助患者管理个人健康方面的有效性。 健康信息，参与自己的保健，维持自己的日常生活活动。我们的研究 设计是独特的，因为我们包括患者在我们的研究的各个方面，包括实地研究， 病人的信息工作在家庭和诊所，协同技术设计的新信息 支持患者工作的技术，以及对家庭技术的评估。

As cliniciansare forced to decrease time spent with patients and the specialization and fragmentation of care increases, patients are required to play an increasingly prominent role in their health care. Yet, few information tools exist to support patients in this active role. In particular, patients often must coordinate their health care across multiple clinicians, learn new health terminology, make treatment choices, manage their home care, track insurance benefits, etc. At the same time, patients are trying to maintain their normal professional and personal lives, but the intense information management demands placed on them can interfere with all those activities. Little is known about this information management work of patients, but such knowledge must be a first step towards developing the tools that patients need to support their active role. The long-term objective of this research is both to understand patients' information management work and to develop new technology that will support that work. Specifically, we propose to (1) develop a model of patients' personal health information management work, (2) develop new technology that supports patients in that work, and (3) evaluate the effectiveness of our new technology in helping patients manage their personal health information, participate in their own health care, and maintain their daily life activities. Our study design is distinctive because we includepatients in all facets of our research, including field studies of patients' information work in the home and the clinic, collaborative technology design of new information technology to support patients' work, and evaluation of the technology in the home.