Perspectives of Australian adults about protecting the privacy of their health information in statistical databases
Perspectives of Australian adults about protecting the privacy of their health information in statistical databases
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DOI：
10.1016/j.ijmedinf.2012.01.005
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发表时间：
2012-04-01
影响因子：
4.9
通讯作者：
Gillard, Patricia
中科院分区：
文献类型：
--
作者：
King, Tatiana;Brankovic, Ljiljana;Gillard, Patricia
目的：本研究的目的是了解公众对医疗保健隐私的态度和看法。这是一个更大项目的一部分，旨在深入了解需要什么样的隐私，并制定技术措施来提供此类隐私。方法：该研究分为两个阶段，定性和定量研究相结合。研究的第一阶段包括安排和促进焦点小组，而在第二阶段我们进行了社会调查。测量：我们测量了对隐私、医学研究和同意的态度；出于研究目的而分享健康信息的隐私问题；隐私问题：在与医疗无关的情况下，医疗记录中的某些特定信息可能会与患者的姓名相关联。结果：研究结果显示，人们对医学研究表示极大支持（98%），但也对健康信息隐私表示担忧（66%）。参与者更愿意在将其健康信息用于医疗以外的任何目的之前征得他们的许可（92%），并且他们希望在允许使用其健康记录之前了解研究的组织和细节（83%）。年龄、教育水平、出生地和就业状况与隐私问题的关系最为密切。研究表明，存在一些特别敏感的问题，并且担心 (42-60%) 在与医疗无关的情况下是否有可能将此类数据与患者姓名联系起来。这些问题包括性传播疾病、堕胎和不孕不育、家族病史/遗传性疾病、精神疾病、药物/酒精相关事件、以前的手术/程序/日期和当前药物的清单。结论：参与者认为，在将其健康信息用于医疗以外的任何目的之前，应先征得其许可。然而，同意和隐私问题并不一定相关。向个人保证其个人健康信息已被去识别化，减少了他们对出于研究目的而发布健康信息是否需要征得同意的担忧，但许多人并没有意识到，从医疗记录中删除他们的姓名和其他直接标识符并不能保证他们的健康信息得到充分的隐私保护。随着采取额外的安全措施来保护隐私，隐私问题逐渐减少。因此，我们建议不要像 Willison [1] 提出的“量身定制关注”，通过在数据发布中引入额外的安全措施来改善个人信息的隐私保护。 (c) 2012 Elsevier Ireland Ltd. 保留所有权利。
Objectives: The aim of this study was to discover the public's attitude and views towards privacy in health care. This is a part of a larger project which aims to gain an insight into what kind of privacy is needed and develop technical measures to provide such privacy.Methods: The study was a two-stage process which combined qualitative and quantitative research. Stage One of the study comprised arranging and facilitating focus groups while in Stage Two we conducted a social survey.Measurements: We measured attitudes towards privacy, medical research and consent; privacy concern about sharing one's health information for research; privacy concern about the possibility that some specific information from medical records could be linked to the patient's name in a situation that was not related to medical treatment.Results: The results of the study revealed both great support for medical research (98%), and concern about privacy of health information (66%). Participants prefer to be asked for their permission before their health information is used for any purpose other than medical treatment (92%), and they would like to know the organisation and details of the research before allowing the use of their health records (83%). Age, level of education, place of birth and employment status are most strongly associated with privacy concerns. The study showed that there are some particularly sensitive issues and there is a concern (42-60%) about any possibility of linking these kinds of data to the patient's name in a situation that is not related to medical treatment. Such issues include sexually transmitted diseases, abortions and infertility, family medical history/genetic disorders, mental illness, drug/alcohol related incidents, lists of previous operations/procedures/dates and current medications.Conclusions: Participants believe they should be asked for permission before their health information is used for any purpose other than medical treatment. However, consent and privacy concerns are not necessary related. Assuring individuals that their personal health information is de-identified reduces their concern about the necessity of consent for releasing health information for research purposes, but many people are not aware that removing their names and other direct identifiers from medical records does not guarantee full privacy protection for their health information. Privacy concerns decrease as extra security measures are introduced to protect privacy. Therefore, instead of "tailoring concern" as proposed by Willison [1] we suggest improving privacy protection of personal information by introducing additional security measures in data publishing. (c) 2012 Elsevier Ireland Ltd. All rights reserved.