中国罕见病诊后医疗服务困境和智慧医疗助力对策分析  

Analysis of countermeasures for medical service dilemma and intelligent continuous management after diagnosis of rare diseases in China

作　　者：李景宇 陈一龙 龚力[1] 唐正 马晓碗 张睿[4] 李东泽[1] 万智[1,5] LI Jingyu;CHEN Yilong;GONG Li;TANG Zheng;MA Xiaowan;ZHANG Rui;LI Dongze;WAN Zhi(Outpatient Department,West China Hospital,Sichuan University,Chengdu,Sichuan 610041,P.R.China;Biomedical Big Data Center,West China Hospital,Sichuan University,Chengdu,Sichuan 610041,P.R.China;Med-X Center for Informatics,Sichuan University,Chengdu,Sichuan 610041,P.R.China;Information Center,West China Hospital,Sichuan University,Chengdu,Sichuan 610041,P.R.China;Emergency Department,West China Hospital,Sichuan University,Chengdu,Sichuan 610041,P.R.China)

机构地区：[1]四川大学华西医院门诊部,成都610041 [2]四川大学华西医院生物医学大数据中心,成都610041 [3]四川大学“医学+信息”中心,成都610041 [4]四川大学华西医院信息中心,成都610041 [5]四川大学华西医院急诊科,成都610041

出　　处：《华西医学》2022年第1期92-96,共5页West China Medical Journal

基　　金：国家自然科学基金(81871000);国家重点研发计划(2017YFC0908702);四川省科学技术厅科技计划项目(2019JDRC0105,2021ZHYZ0023);成都市科学技术局科技项目(2019-YF05-00322-SN);科技部科技创新2030重大项目(2020AAA0105000,2020AAA0105005)。

摘　　要：目前,罕见病诊后存在医疗服务路径不成熟、健康监管不健全和诊后健康数据流不连续等问题。如何恰当的解决这些问题,在破解难题中找到推进罕见病诊后服务的方法,是现在的重点。通过结合四川大学华西医院对罕见病患者诊治的实际情况及已有文献,该文发现充分借助智慧医疗管理技术,建立智慧化连续性健康管理体系,运用智能化健康管理平台、互联网+数字医疗等手段,整合罕见病数据信息,可缓解医疗资源紧缺,破解罕见病诊后医疗服务困境。与此同时,该文就罕见病诊后服务困境及智慧医疗助力可行性对策进行分析,探索了以大型三级甲等医院牵头、医疗联合体医疗单位共建的罕见病网格化共诊共管模式,以落实国家分级诊疗政策,旨在为罕见病诊后医疗服务提供管理策略。At present,there are some problems in the post-diagnosis service of rare diseases,such as immature service path,imperfect health supervision and discontinuous to post-diagnosis data flows.How to properly solve these problems and find a way to promote the post-diagnosis service of rare diseases is the focus now.Based on the actual situation of diagnosis and treatment of patients with rare diseases in West China Hospital of Sichuan University and literature.This paper finds that making full use of the method of intelligent continuous management,establishing a continuous health management system,and integrating rare disease data information through intelligent health management platform and internet medical treatment can alleviate the shortage of medical resources and solve the dilemma of post-diagnosis service of rare diseases.At the same time,this paper analyzes the dilemma of post-diagnosis services of rare diseases and the feasible countermeasures of intelligent medical assistance management,and explores the management of rare diseases led by tertiary hospitals and joint built by medical units of the hospital alliance,in response to the national graded diagnosis and treatment policy,so as to provide all-round health protection for patients with rare diseases for reference and learning.

关 键 词：罕见病 诊后服务困境 智慧医疗 管理对策 

分 类 号：R197.1[医药卫生—卫生事业管理]