在全球儿科急诊医学研究网络中,可用性和共享数据的能力的变化
James Chamberlain1,2, Nathan Kuppermann2,3, Lise E Nigrovic4,5
1Division of Emergency Medicine, Children's National Hospital.
Pediatric emergency care
|October 1, 2025
概括
为了研究,在国际上共享电子健康记录 (EHR) 数据是一项挑战. 许多医院面临着与数据可用性和隐私法规相关的重大障碍,阻碍了大规模的合作研究.
科学领域:
- 医疗信息学 医疗信息学
- 临床研究数据管理数据管理
- 国际卫生研究合作 国际卫生研究合作
背景情况:
- 电子健康记录 (EHR) 为大规模,多样化的研究提供了潜力.
- 合作研究需要跨机构可访问和共享的数据.
研究的目的:
- 在国际研究网络中评估数据的可用性和可访问性.
- 了解国际EHR数据共享的障碍.
- 探索隐私和数据安全监管格局.
主要方法:
- 电子调查分发给儿科紧急研究网络的成员.
- 该调查评估了使用利克特尺度获取特定电子健康记录数据类型的易度.
- 定性问题探讨了国际数据共享和注册建立的障碍和推动因素.
主要成果:
- 48%的受访网站做出了回应,显示了数据可访问性的差异.
- 基本的访问标识符和人口统计数据通常是可访问的; 临床数据需要手动审查.
- 患者的种族,种族,首选语言,生命体征,药物和实验室/放射检查结果的可用性较低.
- 隐私法规和知情同意要求对一些网站构成了重大障碍.
结论:
- 在共享EHR数据用于研究目的方面存在重大障碍.
- 这些障碍包括数据的完整性,可访问性和复杂的监管框架.
- 应对这些挑战对于推动国际合作研究至关重要.
相关概念视频
Pharmacokinetics in Pediatric Patients: Drug Distribution
254
Drug distribution in the pediatric population exhibits unique challenges and considerations due to the physiological differences between children, particularly neonates and infants, and adults. A crucial aspect of pediatric pharmacology is understanding how these differences impact the pharmacokinetics of various drugs, necessitating age-specific dosing strategies to ensure efficacy and safety.Neonates and infants have a higher total body water content, ~75%–90% of their body weight,...
254
Pharmacokinetics in Pediatric Patients: Drug Excretion
212
In pediatric medicine, understanding the renal function and drug elimination nuances is crucial for administering safe and effective treatments. Newborns, in particular, display markedly slower renal functions than adults, profoundly affecting how drugs are cleared from their bodies. This slower drug clearance requires clinicians to extend the dosing intervals for many medications to prevent drug accumulation and toxicity while ensuring therapeutic efficacy.One key area where these adjustments...
212
Pharmacokinetics in Pediatric Patients: Overview and Drug Absorption
246
Understanding the physiological differences in the pediatric population is crucial for effective pharmacotherapy. Neonates, infants, and children exhibit significant variations in gastric pH, gastric emptying time, intestinal transit time, and biliary function. These variations profoundly affect oral drug absorption, necessitating a nuanced approach to pediatric dosing.Neonates present with a unique physiological profile, having a gastric pH greater than 4 and faster and more irregular gastric...
246
Pharmacokinetics in Pediatric Patients: Drug Metabolism
193
In pediatric care, understanding the nuances of hepatic drug metabolism is crucial, as it significantly differs from that of adults. This divergence is primarily due to the developmental stage of drug-metabolizing enzymes, which affects how medications are processed in the body. In neonates, for instance, the activity of Phase I enzymes—critical for the initial breakdown of drugs—is markedly reduced, functioning at just 20–40% of the levels seen in adults. This reduction poses...
193
Dosage Regimens: Partial Pharmacokinetic Parameters
154
It is not uncommon for complete drug pharmacokinetic profiles to remain elusive in pharmacokinetics. This necessitates certain educated assumptions by pharmacokineticists to determine appropriate dosage regimens without comprehensive pharmacokinetic data from animal or human studies. One prevalent assumption is setting the bioavailability factor, denoted as F, to 1 or 100%. This assumption caters to the scenario where a drug doesn't achieve full systemic absorption, resulting in the patient...
154
Methods of Documentation VII: EMR
1.4K
Electronic Medical Records (EMRs) primarily center around electronically documenting patients' health information within a single healthcare organization or practice. They contain essential clinical data related to a patient's medical history, diagnoses, medications, treatment plans, lab results, and other pertinent information relevant to the specific encounter or episode of care. EMRs are designed to streamline documentation and workflow processes within individual healthcare...
1.4K


