患者报告结局在健康医疗大数据领域的应用及伦理学挑战与应对  

The Application of Patient-reported Outcomes in the Big Data of Health Care and Its Ethical Challenges and Countermeasures

作　　者：吴傅蕾 袁长蓉 WU Fulei;YUAN Changrong(School of Nursing,Fudan University,Shanghai 200032,China)

机构地区：[1]复旦大学护理学院

出　　处：《中国医学伦理学》2020年第2期160-164,共5页Chinese Medical Ethics

基　　金：国家自然科学基金面上项目“基于大数据的乳腺癌患者症状管理个性化推荐系统的研究”(71874032)

摘　　要：大数据已经为社会各个领域的发展带来颠覆性变革,健康医疗大数据是我国大数据战略的重要组成。然而目前在健康医疗大数据的顶层设计中忽略了医疗照护过程中最重要的来自患者的声音,即患者报告结局(Patient-reported Outcomes,PROs)。通过介绍PROs的概念、内容、测量方式等及其与健康医疗大数据的整合,总结了现阶段的几大主要研究和实践方向,以及潜在的伦理学挑战和可能的解决策略,以期为健康医疗大数据的研究和应用补充新的视角和思路。Big data has brought disruptive changes to the development of various fields of society.Health care big data is an important part of big data strategy in China.However,at present,the top-level design of health care big data ignores the most important voice from patients in the process of health care,that is,patient-reported outcomes(PROs).By introducing the concept,content,measurement method and others,and its integration with health care big data,this paper summarized several major research and practice directions,potential challenges and possible solutions at this stage,so as to supplement new perspectives and ideas for the research and application of health care big data.

关 键 词：患者报告结局 健康医疗大数据 大数据技术 匿名化 

分 类 号：R197.32[医药卫生—卫生事业管理]