National survey of British public's views on use of identifiable medical data by the National Cancer Registry
National survey of British public's views on use of identifiable medical data by the National Cancer Registry
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DOI：
10.1136/bmj.38805.473738.7c
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发表时间：
2006-05-06
影响因子：
105.7
通讯作者：
Coleman, MP
中科院分区：
文献类型：
--
作者：
Barrett, G;Cassell, JA;Coleman, MP
目的 描述英国公众对国家癌症登记处未经个人同意而使用个人医疗数据的看法，并评估公众对与公共卫生使用可识别健康数据相关的个人隐私的相对重视程度。设计横断面、面对面访谈调查。以英格兰、威尔士和苏格兰为背景。参与者 2872 名受访者，其中 97% 参加了国家统计局综合调查（3 月和 4 月的全国多阶段概率样本） 2005 年（答复率分别为 62% 和 69%）。结果 72%（95% 置信区间 70% 至 74%）的所有受访者不认为国家癌症登记处侵犯了他们的隐私：包含邮政编码、包含姓名和地址，以及收到一封邀请他们参加基于登记的研究的信函。只有 2%（2% 至 3%）的样本认为所有这些都构成侵犯隐私。逻辑回归分析显示，不担心侵犯隐私的比例因国家、种族、社会经济地位和住房保有权的不同而存在显着差异，尽管在所有接受调查的亚组中，大多数受访者并不担心。 81%（79% 至 83%）的受访者表示，他们支持制定癌症登记法定化的法律。 结论 大多数英国公众认为，国家癌症登记处出于公共卫生研究和监测目的而秘密使用个人、可识别的患者信息并不构成对隐私的侵犯。
Objectives To describe the views of the British public on the use of personal medical data by the National Cancer Registry without individual consent, and to assess the relative importance attached by the public to personal privacy in relation to public health uses of identifiable health data.Design Cross sectional, face to face interview survey.Setting England, Wales, and Scotland.Participants 2872 respondents, 97% of those who took part in the Office for National Statistics' omnibus survey, a national multistage probability sample in March and April 2005 (response rates 62% and 69%, respectively).Results 72% (95% confidence interval 70% to 74%) of all respondents did not consider any of the following to be an invasion of their privacy by the National Cancer Registry: inclusion of postcode, inclusion of name and address, and the receipt of a letter inviting them to a research study on the basis of inclusion in the registry. Only 2% (2% to 3%) of the sample considered all of these to amount to an invasion of privacy. Logistic regression analysis showed that the proportions not concerned about invasion of privacy varied significantly by country, ethnicity, socioeconomic status, and housing tenure, although in all subgroups examined most respondents had no concerns. 81% (79% to 83%) of all respondents said that they would support a law making cancer registration statutory.Conclusions Most of the British public considers the confidential use of personal, identifiable patient information by the National Cancer Registry for the purposes of public health research and surveillance not to be an invasion of privacy.