Record linkage research and informed consent: who consents?
Record linkage research and informed consent: who consents?
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DOI：
10.1186/1472-6963-7-18
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发表时间：
2007-02-12
影响因子：
2.8
通讯作者：
Chou, Yiing-Jenq
中科院分区：
文献类型：
--
作者：
Huang, Nicole;Shih, Shu-Fang;Chou, Yiing-Jenq
背景：在卫生服务研究中，将计算机化的健康保险记录与常规收集的调查数据联系起来越来越受欢迎。然而，如果同意不是普遍的，书面知情同意的要求可能会引入一些研究偏差。台湾一项全民健康调查的参与者被要求将其问卷调查结果与他们的全民健康保险记录联系起来。这项研究比较了那些同意和拒绝的人。方法：选取参加台湾全民健康访谈调查（NHIS）并提供完整调查资料的20岁及以上普通成人，具有全国代表性的样本（n = 14611名成人）。在调查结束时，受访者被问及是否允许查阅他们的国民健康保险记录。受访者在调查中提供的信息被用来分析谁更有可能同意联系，谁不同意。结果：在14611名NHIS参与者中，12911名（88%）表示同意，1700名（12%）拒绝同意。老年人、文盲、低收入者和郊区居民拒绝同意的可能性明显更高。土著居民拒绝的可能性要小得多。在同意和拒绝的个人之间，性别和自我报告的健康状况没有差异。结论：本研究是第一个以人群为基础的研究，评估一般亚洲人群的同意模式。与西方社会一样，在台湾这个典型的亚洲社会，有很高比例的成年人同意将他们的健康保险记录和问卷调查结果联系起来。同意者与不同意者在年龄、种族和教育背景等重要方面存在显著差异。因此，高同意率（88%）可能无法完全消除选择偏差的可能性。研究者应该在他们的研究设计中考虑到这种偏倚来源，并调查这种偏倚来源对结果的任何潜在影响。
Background: Linking computerized health insurance records with routinely collected survey data is becoming increasingly popular in health services research. However, if consent is not universal, the requirement of written informed consent may introduce a number of research biases. The participants of a national health survey in Taiwan were asked to have their questionnaire results linked to their national health insurance records. This study compares those who consented with those who refused.Methods: A national representative sample (n = 14,611 adults) of the general adult population aged 20 years or older who participated in the Taiwan National Health Interview Survey (NHIS) and who provided complete survey information were used in this study. At the end of the survey, the respondents were asked if they would give permission to access their National Health Insurance records. Information given by the interviewees in the survey was used to analyze who was more likely to consent to linkage and who wasn't.Results: Of the 14,611 NHIS participants, 12,911 (88%) gave consent, and 1,700 (12%) denied consent. The elderly, the illiterate, those with a lower income, and the suburban area residents were significantly more likely to deny consent. The aborigines were significantly less likely to refuse. No discrepancy in gender and self-reported health was found between individuals who consented and those who refused.Conclusion: This study is the first population-based study in assessing the consent pattern in a general Asian population. Consistent with people in Western societies, in Taiwan, a typical Asian society, a high percentage of adults gave consent for their health insurance records and questionnaire results to be linked. Consenters differed significantly from non-consenters in important aspects such as age, ethnicity, and educational background. Consequently, having a high consent rate ( 88%) may not fully eliminate the possibility of selection bias. Researchers should take this source of bias into consideration in their study design and investigate any potential impact of this source of bias on their results.