Managing Health Information in Your Life

描述(由申请人提供)： 随着临床医生被迫减少与病人相处的时间，护理的专业化和碎片化增加，要求病人在他们的保健中发挥越来越突出的作用。然而，很少有信息工具支持患者扮演这一积极的角色。特别是，患者通常必须在多个临床医生之间协调他们的医疗保健，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，患者试图维持他们正常的职业和个人生活，但施加在他们身上的强烈的信息管理要求可能会干扰所有这些活动。人们对患者的这种信息管理工作知之甚少，但这种知识必须是开发患者支持其积极作用所需工具的第一步。这项研究的长期目标是了解患者的信息管理工作，并开发支持这项工作的新技术。具体地说，我们建议(1)开发患者个人健康信息管理工作的模型，(2)开发支持患者这项工作的新技术，以及(3)评估我们的新技术在帮助患者管理个人健康信息、参与自己的医疗保健和维持日常生活活动方面的有效性。我们的研究设计与众不同，因为我们的研究包括所有方面的患者，包括对患者在家中和诊所的信息工作的实地研究，对支持患者工作的新信息技术的协作技术设计，以及对家庭技术的评估。

DESCRIPTION (provided by applicant): As clinicians are 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 include patients 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.