Genetic Services Branch, Maternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Maryland, USA.
Genet Med. 2010 Dec;12(12 Suppl):S256-60. doi: 10.1097/GIM.0b013e3181fe5d9c.
Newborn screening is a complex system of interrelated multidimensional components singly focused on safeguarding the health of our nation's newborns. The long-term health outcome and well-being of individuals identified by newborn screening represents a meaningful measurement of the performance of the newborn screening system. This assessment of long-term follow-up requires a systems approach that connects stakeholders, processes, and outcomes through the collection, integration, evaluation, and sharing of key data and metrics.
A review of the principles of a systems approach and its application to newborn screening long-term follow-up was performed. Past and current efforts by HRSA/MCHB that address individual components of newborn screening were assessed and utilized to outline lessons learned and suggest next steps.
The principle features of a systems approach applied to the creation and utilization of a health information exchange system for the long-term follow up of screen positive patients is defined. The application of this approach is in progress through the HRSA/MCHB's Effective Follow-up in Newborn Screening project.
While several elements are in place to realize a systems approach, the authors think that the key is an integrated, multidirectional health information exchange system that functions locally, regionally and nationally, and enables information exchange between private and public health sectors.
新生儿筛查是一个由相互关联的多维组成部分组成的复杂系统，其单一目标是保障我国新生儿的健康。通过新生儿筛查发现的个体的长期健康结果和幸福感是衡量新生儿筛查系统性能的一个有意义的指标。对长期随访的这种评估需要一种系统方法，通过收集、整合、评估和共享关键数据和指标，将利益相关者、流程和结果联系起来。
对系统方法的原则及其在新生儿筛查长期随访中的应用进行了回顾。评估了 HRSA/MCHB 过去和现在针对新生儿筛查各个组成部分的努力，并利用这些努力来总结经验教训并提出下一步建议。
定义了应用系统方法创建和利用健康信息交换系统以进行阳性筛查患者长期随访的主要特征。HRSA/MCHB 的有效新生儿筛查随访项目正在应用这种方法。
虽然已经有几个要素可以实现系统方法，但作者认为关键是建立一个集成的、多向的健康信息交换系统，该系统在本地、地区和全国范围内运行，并能够在私营和公共卫生部门之间进行信息交换。
