Utah Medical Home Web Site Project

虽然大多数儿童慢性疾病/病症非常罕见（<1/3000），但它们共同影响 大约13%的美国儿童。一个忙碌的儿科医生或家庭医生将照顾许多这样的 患者，尽管很少（如果有的话）她/他的其他患者将共享相同的诊断。提供最佳护理 有特殊卫生保健需要的儿童（CSHCN）的教育是具有挑战性的，需要最新的知识， 获得专门的卫生保健资源，并有相当多的时间来管理和协调护理。家庭 教育工作者也是护理的主要提供者，当所有提供者都能够 信息，并作为合作伙伴一起工作。这些都是“医疗之家”的关键组成部分。 该项目旨在支持初级保健医生以及家庭和教育工作者， 通过提供基于Web的信息和资源访问系统来应对挑战。犹他州协作组织 医疗家庭项目（UCMHP）开发了MedHome门户网站（http：www.medhomeportal.org）， 实现这一目标。这项建议将进一步发展该网站的基础设施，提高其效用， 可用性，其产品及其影响，通过以下具体目标： 1.转换为XML数据结构和完整的创作和内容管理工具，集成 UMLS索引。XML的使用将为数据和文档提供一个健壮而灵活的结构。UMLS 索引将允许最佳搜索和导航。网站和内容管理流程/工具 将能够严格制定和审查内容，并维持关于以下方面的最新信息： 服务 2.扩展并优化MedHome门户的实用性和可用性：可用性测试将推动持续的 改进了演示、导航和个性化功能。可访问性将得到优化。 3.与合作伙伴合作，扩大门户网站的内容和影响。区域和国家伙伴关系将 扩大内容开发和同行评审，通过临床 信息系统，并使其他地区能够访问自定义版本的门户与本地 服务列表。 将对医生、家庭、教育工作者和其他人进行宣传和培训。与 增加注册用户基础，加强评价将成为可能。卫生系统和公共卫生 伙伴关系将支持长期可持续性。

Though most chronic diseases/conditions in childhood are very uncommon (<1/3000), together they affect about 13% of children in the United States. A busy pediatrician or family physician will care for many such patients, though few, if any, of her/his other patients will share the same diagnoses. Providing optimal care for Children with Special Health Care Needs (CSHCN) is challenging, requiring up-to-date knowledge, ready access to specialized health care resources, and considerable time to manage and coordinate care. Families and educators are also key providers of care and CSHCN will benefit when all the providers are enabled with information and when they work together as partners. These are key components of a "Medical Home". This project seeks to support primary care physicians, as well as families and educators, in meeting these challenges by providing a Web-based information and resource access system. The Utah Collaborative Medical Home Project (UCMHP) has developed the MedHome Portal (http://www.medhomeportal.org) to accomplish this goal. This proposal will further development of the site's infrastructure, enhance its utility and usability, and its offerings and its impact through the following specific aims: 1. Convert to an XML data structure and complete authoring and content management tools, integrating UMLS indexing. Use of XML will provide a robust and flexible structure for data and documents. UMLS indexing will allow optimal searching and navigation. Site and content management processes/tools will enable rigorous development and review of content and maintenance of current information on services. 2. Expandand optimize utility and usability of the MedHome Portal: Usability testing will drive ongoing improvement in presentation, navigation, and personalized features. Accessibility will be optimized. 3. Work with partners to expandcontent and impact of the Portal. Regional and national partnerships will expand content development and peer review, offer MedHome Portal resources through clinical information systems, and enable other locales to access customized versions of the Portal with local service listings. Promotion and training will be integrated for physicians, families, educators, and others. With increased registered user base, enhanced evaluation will be possible. Health system and public health partnerships will support long-term sustainability.