Penn Medicine Center for Digital Health, University of Pennsylvania, 3400 Civic Blvd, Philadelphia, PA, USA.
Penn Medicine Center for Health Care Innovation, University of Pennsylvania, Philadelphia, PA, USA.
BMC Med Inform Decis Mak. 2019 Aug 8;19(1):157. doi: 10.1186/s12911-019-0886-9.
Patients generate large amounts of digital data through devices, social media applications, and other online activities. Little is known about patients' perception of the data they generate online and its relatedness to health, their willingness to share data for research, and their preferences regarding data use.
Patients at an academic urban emergency department were asked if they would donate any of 19 different types of data to health researchers and were asked about their views on data types' health relatedness. Factor analysis was used to identify the structure in patients' perceptions of willingness to share different digital data, and their health relatedness.
Of 595 patients approached 206 agreed to participate, of whom 104 agreed to share at least one types of digital data immediately, and 78% agreed to donate at least one data type after death. EMR, wearable, and Google search histories (80%) had the highest percentage of reported health relatedness. 72% participants wanted to know the results of any analysis of their shared data, and half wanted their healthcare provider to know.
Patients in this study were willing to share a considerable amount of personal digital data with health researchers. They also recognize that digital data from many sources reveal information about their health. This study opens up a discussion around reconsidering US privacy protections for health information to reflect current opinions and to include their relatedness to health.
患者通过设备、社交媒体应用程序和其他在线活动生成大量数字数据。目前尚不清楚患者对其在线生成的数据的看法，以及这些数据与健康的相关性、他们愿意为研究目的共享数据的意愿，以及他们对数据使用的偏好。
本研究在一所学术性城市急诊部调查了患者，询问他们是否愿意将 19 种不同类型的数据中的任何一种捐赠给健康研究人员，并了解他们对数据类型与健康相关性的看法。采用因子分析来确定患者对不同类型数字数据的共享意愿及其与健康相关性的看法的结构。
在 595 名被调查者中，有 206 名同意参与研究，其中 104 名同意立即分享至少一种类型的数字数据，78%的患者同意在死后捐赠至少一种类型的数据。电子病历、可穿戴设备和谷歌搜索记录（80%）的健康相关性报告比例最高。72%的参与者希望了解他们共享数据的任何分析结果，其中一半希望他们的医疗服务提供者了解。
本研究中的患者愿意与健康研究人员分享相当数量的个人数字数据。他们还认识到，来自多个来源的数字数据可以揭示有关其健康的信息。本研究就重新考虑美国的健康信息隐私保护以反映当前意见并包括其与健康的相关性展开了讨论。
