罕见病专题地图的设计  

Development of the Rare Disease Map

作　　者：戴国琳 刘新遥 陈荃[1] 胡红濮[1] DAI Guolin;LIU Xinyao;CHEN Quan;HU Hongpu(Institute of Medical Information,CAMS&PUMC,Beijing 100020,China)

机构地区：[1]中国医学科学院&北京协和医学院医学信息研究所,北京市100020

出　　处：《中国全科医学》2021年第28期3643-3647,共5页Chinese General Practice

基　　金：国家社会科学基金一般项目(17BGL184)——大数据环境下分级诊疗服务模式研究。

摘　　要：罕见病问题已成为我国一个重要的公共健康问题和不可忽视的社会问题。为了更好地利用罕见病大数据,以为罕见病患者提供信息支持,并辅助卫生决策,本研究基于ArcGIS技术,对罕见病专题地图进行了设计。首先,依照设计的目标和流程,分别对罕见病专题地图的功能和绘制流程进行系统阐述。接着,通过绘制罕见病专题地图的应用模式图对罕见病专题地图在实现罕见病数据监测、风险分析和评估、信息管理功能上的路径和方法进行直观展示。本文为罕见病专题地图的绘制提供了技术路线和思维,最终以本文为指导研制出的罕见病专题地图可为罕见病的有效防治、科学管理和深入研究提供新的工具。In China,rare diseases have become an important public health issue and a social issue that cannot be neglected.To provide supports for rare disease patients and healthcare decision-making using rare disease big data,we developed the rare disease map using the ArcGIS technology:Firstly,systematically describing the functionality and drawing process of the rare disease map in accordance with the design objectives and the design process.Secondly,developing application modes of the rare disease map to visually demonstrate the paths and methods used for rare disease surveillance,risk assessment and analysis as well as information management.Our study provides ideas and technical routes for the development of a rare disease map,and our rare disease map may be used as a new tool aiding effective prevention and treatment,scientific management and in-depth research regarding rare diseases.

关 键 词：少见病 罕见病 地理信息系统 ARCGIS 地图 设计 

分 类 号：R364[医药卫生—病理学] R319[医药卫生—基础医学]