患者生成的数字健康数据:芬兰神经注册表的一个例子
Hanna Kuusisto1,2, Päivi Hämäläinen1,3,4, Henriikka Nurmi3
1University of Eastern Finland, Department of Health and Social Management, Kuopio, Finland.
Studies in health technology and informatics
|April 9, 2025
概括
通过数字工具,患者生成的健康数据可以增强对神经系统疾病的护理. 芬兰神经注册有效地整合了患者数据,改善了多发性硬化症和患者的临床决策.
科学领域:
- 神经学 神经学
- 医疗信息学 医疗信息学
- 数字健康数字健康
背景情况:
- 患者生成的健康数据 (PGHD) 越来越多地通过移动设备和应用程序被利用.
- 电子患者记录 (EPR) 对于管理神经疾病数据至关重要.
- 芬兰神经系统注册中心旨在使用综合数据监测神经系统疾病.
研究的目的:
- 描述芬兰神经注册局多发性硬化症 (MS) 患者界面及其的数字日记.
- 突出患者生成的数据如何促进患者参与临床决策.
- 展示该注册表的协作开发和在EPRs中的集成.
主要方法:
- 将患者界面和数字日记集成到芬兰神经系统注册表中.
- 利用EPR用于数据管理和医疗保健专业人员 (HCP) 的可访问性.
- 合作开发涉及医疗保健专家,IT专家和患者.
主要成果:
- 芬兰多发性硬化病登记 (10岁) 覆盖了大约90%的多发性硬化病患者 (12,633名患者).
- 芬兰病登记册 (年龄在3岁以下) 包括18325名患者.
- 在HCP接口上显示的患者数据促进了共享决策.
结论:
- 芬兰神经系统注册表显示了神经系统疾病中PGHD的成功整合.
- 利益相关者之间的密切合作是无数据整合和改善患者结果的关键.
- 数字工具和注册表提高了患者参与度和MS和的临床管理.
相关概念视频
Data Collection I
5.9K
Data collection gathers information needed to make accurate judgments about a patient's present condition. During a health history interview, subjective data is collected from the patient, their caregivers, or family members, and objective data is collected through observations and physical assessment. Patients are the primary source of subjective data. Thus information gathered from patients through interviews, observations, and physical examination is primary data. Secondary sources of...
5.9K
Purpose of Health Records I
1.1K
The vital purpose of health records is to provide a complete and accurate account of a patient's medical history, including communication, diagnostic and therapeutic orders, care planning, research, and quality review.
Here's a breakdown of how health records serve these purposes:
Here's a breakdown of how health records serve these purposes:
1.1K
Data Reporting and Recording
4.6K
Reporting and recording are crucial in data documentation. The timely, thorough, and accurate documentation of facts is essential when recording patient data. Failure to record findings during an assessment or interpretation of a problem will result in loss of information and make the patient document unreliable. The reader is left with general impressions if the information is not specific. A recording is documenting data of the individual's health information in a traceable, secure, and...
4.6K


