Public preferences about secondary uses of electronic health information.
Public preferences about secondary uses of electronic health information.
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DOI：
10.1001/jamainternmed.2013.9166
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发表时间：
2013-10-28
影响因子：
39
通讯作者：
Asch, David A.
中科院分区：
文献类型：
--
作者：
Grande, David;Mitra, Nandita;Shah, Anand;Wan, Fei;Asch, David A.
随着健康信息技术的发展，个人健康信息的二次利用在推进研究、公共健康和医疗保健方面提供了希望。公众对个人健康数据共享的看法对于建立和评估监督这些数据使用的道德和监管结构非常重要。衡量患者对共享电子健康信息的偏好，以达到次要目的--使用自己的医疗保健以外的其他用途。在这项联合分析研究中，参与者被随机分配到描述电子健康信息二次使用的18个场景中的6个，由3个属性构成：使用(研究、医疗质量改进、营销)、用户(大学医院、制药公司、公共卫生部门)和数据敏感性(病史、病史和基因测试结果)。这一实验设计使参与者能够透露他们对个人健康信息二次使用的偏好。我们调查了3336名西班牙裔(n=568)、非西班牙裔非裔美国人(n=500)和非西班牙裔白人(n=2268)成年人，占具有全国代表性的在线小组的65.1%。参与者对每个联合情景的反应是，在1-10分(1=低，10=高)的范围内对他们分享电子个人健康信息的意愿进行评级。联合分析产生反映维度(使用、用户、敏感度)对共享个人健康信息的意愿的贡献的重要性权重。在联合分析中，数据的使用是最重要的因素(63.4%的重要性权重)，而用户(32.6%的重要性权重)和数据敏感性(重要性权重：3.1%)是最重要的因素。在未经调整的模型中，与研究(使用)和大学医院(用户)相比，营销使用(−1.55，p<；0.001)、质量改进(−0.51，p<；0.001)、制药公司用户(−0.80，p<；0.001)和公共卫生部门用户(−0.52，p<；0.001)与更不愿意分享健康信息相关。与白人相比，拉美裔和非裔美国人对这三种用途的歧视较少。参与者最关心使用他们的健康信息的特定目的，尽管种族和少数民族之间的差异较小。信息的使用者是次要的，信息的敏感性不是一个重要因素。在管理卫生信息二次利用的政策中应考虑这些偏好。
As health information technology grows secondary uses of personal health information offer promise in advancing research, public health, and health care. Public perceptions about personal health data sharing are important to establish and evaluate ethical and regulatory structures for overseeing the use of these data. Measure patient preferences toward sharing their electronic health information for secondary purposes—uses other than their own health care.. In this conjoint analysis study, participants were randomized to receive 6 of 18 scenarios describing secondary uses of electronic health information, constructed with 3 attributes: uses (research, health care quality improvement, marketing), users (university hospital, drug company, public health department), and data sensitivity (medical history, medical history plus genetic test results). This experimental design enabled participants to reveal their preferences for secondary uses of their personal health information. We surveyed 3,336 Hispanic (n=568), non-Hispanic African American (n=500), and non-Hispanic White (n=2,268) adults representing 65.1% of those from a nationally representative, online panel. Participants responded to each conjoint scenario by rating their willingness to share their electronic personal health information on a 1–10 scale (1=low, 10=high). Conjoint analysis yields importance weights reflecting the contribution of a dimension (use, user, sensitivity) to willingness to share personal health information. The use of data was the most important factor in the conjoint analysis (63.4% importance weight) compared to the user (32.6% importance weight) and data sensitivity (importance weight: 3.1%). In unadjusted models, marketing uses (−1.55, p<0.001), quality improvement uses (−0.51, p<0.001), drug company users (−0.80, p<0.001) and public health department users (−0.52, p<0.001) were associated with less willingness to share health information compared to research (use) and university hospitals (users). Hispanics and African-Americans discriminated less between the three uses compared to Whites. Participants cared most about the specific purpose for using their health information, though differences were smaller among racial and ethnic minorities. The user of the information was of secondary importance and the sensitivity of information was not a significant factor. These preferences should be considered in policies governing secondary uses of health information.
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