罕见病相关信息素养面临的问题及思考

Problems and Thinking of Information Literacy Related to Rare Diseases

简述医护人员和患者因罕见病信息缺乏导致确诊困难、检索查询信息困难等问题,提出相应措施:普及罕见病知识,建立罕见病临床信息数据库;推广罕见病信息交流网络平台;医院信息服务工作者应对工作方法和工作流程加以改进。

The paper describes problems faced by doctors, nurses and patients due to lack of rare disease information, for example, difficulties in making a definite diagnosis and retrieving and searching information. It proposes relevant measures ： popularizing knowledge of rare diseases, setting up a clinical information database of rare diseases, popularizing the online information exchange platform for rare diseases. Staff engaged in hospital information services should improve their work methods and procedures.