Division of General Internal Medicine, Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia2Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia.
JAMA Intern Med. 2013 Oct 28;173(19):1798-806. doi: 10.1001/jamainternmed.2013.9166.
As health information technology grows, secondary uses of personal health information offer promise in advancing research, public health, and health care. Public perceptions about sharing personal health data are important for establishing and evaluating ethical and regulatory structures to oversee the use of these data.
To measure patient preferences about sharing their electronic health information for secondary purposes (other than their own health care).
DESIGN, SETTING, AND PARTICIPANTS: In this conjoint analysis study, we surveyed 3336 adults (568 Hispanic, 500 non-Hispanic African American, and 2268 non-Hispanic white); participants were randomized to 6 of 18 scenarios describing secondary uses of electronic health information, constructed with 3 attributes: uses (research, quality improvement, or commercial marketing), users (university hospitals, commercial enterprises, or public health departments), and data sensitivity (whether it included genetic information about their own cancer risk). This design enabled participants to reveal their preferences for secondary uses of their personal health information.
Participants responded to each conjoint scenario by rating their willingness to share their electronic personal health information on a 1 to 10 scale (1 represents low willingness; 10, high willingness). Conjoint analysis yields importance weights reflecting the contribution of a dimension (use, user, or sensitivity) to willingness to share personal health information.
The use of data was a more important factor in the conjoint analysis (importance weight, 64.3%) than the user (importance weight, 32.6%) and data sensitivity (importance weight, 3.1%). In unadjusted linear regression models, marketing uses (β = -1.55), quality improvement uses (β = -0.51), drug company users (β = -0.80), and public health department users (β = -0.52) were associated with less willingness to share health information than research uses and university hospital users (all P < .001). Hispanics and African Americans differentiated less than whites between uses.
Participants cared most about the specific purpose for using their health information, although differences were smaller among racial and ethnic minorities. The user of the information was of secondary importance, and the sensitivity was not a significant factor. These preferences should be considered in policies governing secondary uses of health information.
随着健康信息技术的发展，个人健康信息的二次利用有望促进研究、公共卫生和医疗保健的发展。公众对共享个人健康数据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。
衡量患者对为二次目的（非自身医疗保健）共享其电子健康信息的偏好。
设计、设置和参与者：在这项联合分析研究中，我们调查了 3336 名成年人（568 名西班牙裔，500 名非西班牙裔非裔美国人，2268 名非西班牙裔白人）；参与者被随机分配到 18 个情景中的 6 个，这些情景描述了电子健康信息的二次利用，由 3 个属性构建：用途（研究、质量改进或商业营销）、用户（大学医院、商业企业或公共卫生部门）和数据敏感性（是否包含自身癌症风险的遗传信息）。这种设计使参与者能够表达他们对个人健康信息二次利用的偏好。
参与者通过在 1 到 10 的等级上对每个联合情景进行评分来回答，1 表示低意愿，10 表示高意愿。联合分析产生的重要性权重反映了一个维度（用途、用户或敏感性）对共享个人健康信息的意愿的贡献。
数据的使用是联合分析中更为重要的因素（重要性权重 64.3%），而用户（重要性权重 32.6%）和数据敏感性（重要性权重 3.1%）则是次要因素。在未调整的线性回归模型中，营销用途（β=-1.55）、质量改进用途（β=-0.51）、制药公司用户（β=-0.80）和公共卫生部门用户（β=-0.52）与研究用途和大学医院用户相比，人们更不愿意共享健康信息（均 P<.001）。西班牙裔和非裔美国人之间的差异小于白人。
参与者最关心使用其健康信息的具体目的，尽管在种族和民族少数群体中差异较小。信息使用者是次要因素，敏感性不是重要因素。这些偏好应在管理健康信息二次利用的政策中予以考虑。
