Alternatives to project-specific consent for access to personal information for health research: What is the opinion of the Canadian public?
Alternatives to project-specific consent for access to personal information for health research: What is the opinion of the Canadian public?
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DOI：
10.1197/jamia.m2457
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发表时间：
2007-11-01
影响因子：
6.4
通讯作者：
Thabane, Lehana
中科院分区：
文献类型：
--
作者：
Willison, Donald J.;Schwartz, Lisa;Thabane, Lehana
目的：本研究旨在确定公众对替代方案的意见，以项目特定的同意使用他们的个人信息的健康研究，设计：作者进行了一项固定响应随机数字拨号电话调查的1,230名成年人在加拿大各地。测量：我们测量了对隐私和健康研究的态度，信任不同的机构，以保持信息保密;和同意选择研究使用自己的健康信息，包括医疗记录审查，自动提取的信息从电子病历，并将教育或收入与健康data.Results：支持是强大的健康研究和隐私保护。研究传染病和卫生保健质量的支持率最高（85%至89%）。数据机构、大学研究人员、医院和疾病基金会的信任度最高（78%至80%）。4%的受访者认为纸质病历中的信息不应用于研究，32%的人认为每次使用都应获得许可，29%的人支持广泛同意，24%的人支持通知和选择退出，11%的人认为没有必要通知或同意。对于从电子病历中自动提取数据，意见更加两极分化。受访者更愿意将教育与健康数据比income.Conclusions：大多数公众支持替代研究特定的同意，但很少有人支持使用没有任何通知或同意。医疗记录中应记录对研究使用个人健康信息的同意选择。挑战仍然是如何最好地引出这些选择并确保它们是最新的。
Objectives: This study sought to determine public opinion on alternatives to project-specific consent for use of their personal information for health research,Design: The authors conducted a fixed-response random-digit dialed telephone survey of 1,230 adults across Canada.Measurements: We measured attitudes toward privacy and health research; trust in different institutions to keep information confidential; and consent choice for research use of one's own health information involving medical record review, automated abstraction of information from the electronic medical record, and linking education or income with health data.Results: Support was strong for both health research and privacy protection. Studying communicable diseases and quality of health care had greatest support (85% to 89%). Trust was highest for data institutes, university researchers, hospitals, and disease foundations (78% to 80%). Four percent of respondents thought information from their paper medical record should not be used at all for research, 32% thought permission should be obtained for each use, 29% supported broad consent, 24% supported notification and opt out, and 11% felt no need for notification or consent. Opinions were more polarized for automated abstraction of data from the electronic medical record. Respondents were more willing to link education with health data than income.Conclusions: Most of the public supported alternatives to study-specific consent, but few supported use without any notification or consent. Consent choices for research use of one's health information should be documented in the medical record. The challenge remains how best to elicit those choices and ensure that they are up-to-date.