数智化技术在罕见病患者院外管理阶段的应用现状  

The Application of Digital Intelligence Technology in the Management of Non-Hospitalized Patients with Rare Diseases

作　　者：姚懿洋 高怡[2] 郭懿萱 秦卓越 张瑶方 景佳奇 谢静[1,3] 郭健 张抒扬[1,3,4] YAO Yiyang;GAO Yi;GUO Yixuan;QIN Zhuoyue;ZHANG Yaofang;JING Jiaqi;XIE Jing;GUO Jian;ZHANG Shuyang(State Key Laboratory of Complex Severe and Rare Diseases,Chinese Academy of Medical Sciences&Peking Union Medical College,Beijing 100730,China;Department of Rare Diseases,Chinese Academy of Medical Sciences&Peking Union Medical College,Beijing 100730,China;School of Public Health,Shanxi Medical University,Taiyuan 030001,China;Department of Cardiology,Peking Union Medical College Hospital,Chinese Academy of Medical Sciences&Peking Union Medical College,Beijing 100730,China)

机构地区：[1]中国医学科学院北京协和医院疑难重症及罕见病全国重点实验室,北京100730 [2]山西医科大学公共卫生学院,太原030001 [3]中国医学科学院北京协和医院罕见病医学科,北京100730 [4]中国医学科学院北京协和医院心内科,北京100730

出　　处：《罕见病研究》2025年第1期46-53,共8页Journal of Rare Diseases

基　　金：国家自然科学基金(72342015);国家重点研发计划(2022YFC2703100);山西省高等学校大学生创新创业训练计划项目(20240321);山西省留学人员科技活动择优资助项目(20240017);北京协和医院医院管理研究重点课题(GLKT-2024-1)。

摘　　要：目的从宏观管理层面系统梳理数智化技术在罕见病患者院外管理阶段的应用现状,分析存在的不足与挑战,以期为数智化驱动罕见病患者院外管理模式的发展和优化提供参考与建议。方法采用主题词和自由词结合的方式,围绕“罕见病、患者管理、院外管理、社区管理、数智化、大数据、远程医疗”等词汇设计检索式,计算机检索PubMed、ScienceDirect、Web of Science、中国知网、万方数据知识服务平台、维普中文科技期刊数据库建库至2024年7月所有数智化技术在罕见病患者院外管理阶段应用的相关文献,提取第一作者、国家和地区、发表时间、研究对象、数智化技术类型和应用效果等关键信息进行汇总分析。结果本研究共纳入13篇文献,来自8个国家和地区,涉及的数智化技术包括互联网信息平台、可穿戴设备、远程医疗管理平台和电子健康数据库。数智化技术的应用人群包括罕见病患者、患者照护人员和专业医护人员。各技术在不同人群中的应用效果良好,互联网信息平台可帮助患者及其照护人员了解更多疾病知识,提高自我管理能力;可穿戴设备可实时监测患者健康状况、预警紧急事件;远程医疗管理平台可优化医疗资源分配、加强医患沟通;电子健康数据库可促进院内外数据互联互通,通过数据共享来提高决策准确性。结论数智化技术在罕见病患者院外管理中的应用已显示出积极效果。未来需进一步围绕精确性、即时性、适用性和隐私保护等方面的不足和挑战进行优化,并与“患者-社区-医院”三位一体管理体系融合,更好地发挥数智化技术的优越性,提高患者院外管理的效率和质量。Objective To provide references to and give suggestions to the development and optimiza-tion of Digital Intelligence(DI)technology in management of non-hospitalized patients by systematical review the application of digital technology in non-hospital settings.Methods We designed the search strategy and used the words"rare diseases""patient management""non-hospitalized management""community management""digital intelligence""big data""telemedicine"as MESH terms or free words.We searched the database of PubMed,Science-Direct,Web of Science,CNKI,Wanfang and VIP from the beginning of the database to July 2024 and used computer retrieval to get the literatures on the application of DI technology in the management of patients with rare diseases in non-hospital setting.We extracted the information of the first author,country or region,publication time,research participants,DI technology application,and application effect for summary analysis.Results A total of 13 articles were included in this study,which were from 8 countries or regions.We found that DI technologies used were in the following forms:Internet information platform,wearable devices,telemedicine management platform and electronic database.The DI technology was used by the patients with rare diseases,patient caregivers and professional medical staffs.The application of all the forms above in different populations had good effect.The Internet information platform helped patients and their caregivers learn more about the disease and improved their self-management ability.The wearable device helped monitor the health status of patients in real time and predict the risk of emergent events.The telemedicine management platform facilitated to optimize the allocation of medical resources and strengthen doctor-patient communication.The electronic health database promoted the interconnection of data inside and outside the hospital and improved the accuracy of decision-making through data sharing.Conclusions The application of DI technology in the management of patients

关 键 词：罕见病 数智化 院外管理 

分 类 号：R197[医药卫生—卫生事业管理] TP39[医药卫生—公共卫生与预防医学]