PEDSnet: How A Prototype Pediatric Learning Health System Is Being Expanded Into A National Network
PEDSnet: How A Prototype Pediatric Learning Health System Is Being Expanded Into A National Network
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DOI：
10.1377/hlthaff.2014.0127
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发表时间：
2014-07-01
期刊：
影响因子：
9.7
通讯作者：
Colletti, Richard B.
中科院分区：
文献类型：
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作者：
Forrest, Christopher B.;Margolis, Peter;Colletti, Richard B.
除少数情况外，儿科疾病是罕见病。正因为如此，没有任何一家机构有足够的患者来产生足够的样本量来产生可推广的知识。汇总来自许多儿科机构的数百万儿童的电子临床数据有望产生足够大的数据集，以加速知识发现。然而，如果没有有意识地将这些数据嵌入儿科学习卫生系统（定义为有目的地在常规护理环境中进行研究并在护理点实施证据的卫生保健组织），根据这些新知识采取行动的努力，减少儿童生病时所经历的痛苦和痛苦，将是无效的。在这篇文章中，我们讨论了一个儿童学习健康系统的原型，improecarenow，用于患有炎症性肠病的儿童。这个原型正在扩大规模，以创建PEDSnet，这是一个全国性的网络，将支持跨疾病、专业和机构进行有效的临床试验、观察性研究和质量改进。
Except for a few conditions, pediatric disorders are rare diseases. Because of this, no single institution has enough patients to generate adequate sample sizes to produce generalizable knowledge. Aggregating electronic clinical data from millions of children across many pediatric institutions holds the promise of producing sufficiently large data sets to accelerate knowledge discovery. However, without deliberately embedding these data in a pediatric learning health system (defined as a health care organization that is purposefully designed to produce research in routine care settings and implement evidence at the point of care), efforts to act on this new knowledge, reducing the distress and suffering that children experience when sick, will be ineffective. In this article we discuss a prototype pediatric learning health system, ImproveCareNow, for children with inflammatory bowel disease. This prototype is being scaled up to create PEDSnet, a national network that will support the efficient conduct of clinical trials, observational research, and quality improvement across diseases, specialties, and institutions.