The importance of purpose: moving beyond consent in the societal use of personal health information.
The importance of purpose: moving beyond consent in the societal use of personal health information.
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DOI：
10.7326/m14-1118
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发表时间：
2014-12-16
影响因子：
39.2
通讯作者：
Asch DA
中科院分区：
文献类型：
--
作者：
Grande D;Mitra N;Shah A;Wan F;Asch DA
电子健康记录系统的采用增加了患者级电子健康信息的可用性。调查公众在不同同意安排下对电子健康信息二次使用的支持程度。国家实验调查，以检查对电子健康信息使用的看法在三个方面的变化：患者同意（获得与未获得）、使用（研究与营销）和结果框架（没有结果的抽象描述与具体结果）。全国代表性调查。3064名非裔美国人，西班牙裔和非西班牙裔白人代表65%的回复率。1-10分制的小短文中描述的健康信息使用的适当性（1=完全不适当；10=非常适当）。平均评分范围从低至3.81的营销用途（当未获得同意并提供具体结果时）到高至7.06的研究用途（当获得同意并提供具体结果时）。参与者认为获得同意的场景比未获得同意的场景更合适（+1.01;95% CI 0.69, 1.34， P<0.001）。参与者认为，与研究使用相比，营销使用的场景更不合适（- 2.03;95% CI - 2.27, - 1.78， P<0.001）。未经同意的研究用途被认为比同意的营销用途更合适（5.65 vs. 4.52；差异= 1.13;95% CI 0.87, 1.39）。尽管反应率很高，但参与者对假设情景和结果的评价可能容易受到非反应偏差的影响。虽然卫生信息共享的方法强调同意，但公众舆论也强调目的，这表明需要更多地关注信息使用的社会价值。国家人类基因组研究所
Adoption of electronic health record systems has increased the availability of patient-level electronic health information. Examine public support for secondary uses of electronic health information under different consent arrangements. National experimental survey to examine perceptions of uses of electronic health information when varying along three dimensions: patient consent (obtained vs. not obtained), use (research vs. marketing), and framing of the findings (abstract description without results vs. specific results). Nationally representative survey. 3,064 African American, Hispanic, and non-Hispanic White individuals representing a response rate of 65%. Appropriateness of health information use described in vignettes on a 1-10 scale (1=not at all appropriate; 10=very appropriate). Mean ratings ranged from a low of 3.81 for a marketing use when consent was not obtained and specific results were presented to a high of 7.06 for a research use when consent was obtained and specific results were presented. Participants rated scenarios where consent was obtained as more appropriate compared to when consent was not obtained (+1.01; 95% CI 0.69, 1.34, P<0.001). Participants rated scenarios where the use was marketing as less appropriate compared to when the use was research (−2.03; 95% CI −2.27, −1.78, P<0.001). Unconsented research uses were seen as more appropriate than consented marketing uses (5.65 vs. 4.52; difference = 1.13; 95% CI 0.87, 1.39).. Participants rated hypothetical scenarios and results could be vulnerable to non-response bias despite the high response rate. Although approaches to health information sharing emphasize consent, public opinion also emphasizes purpose suggesting a need to focus more attention on the social value of information use. National Human Genome Research Institute