Privacy and confidentiality concerns--are we up to the challenge?
Privacy and confidentiality concerns--are we up to the challenge?
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隐私和保密问题——我们能应对挑战吗？
DOI：
10.1093/intqhc/12.1.7
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发表时间：
2000
期刊：
影响因子：
--
通讯作者：
D. Willison
中科院分区：
文献类型：
--
作者：
D. Willison
如果咨询，则用于研究目的，但德特默教授表示，如果在他们不知道数据隐私立法的情况下使用这些信息，可能会产生负面影响，这一点令人担忧。对于大多数人来说，通过审查行政数据集和控制个人信息的使用来获得医疗保健的机会似乎并不是电子健康记录。作为健康信息的使用者--导致行使拒绝或选择退出的选择权[9，无论是为了政策制定、质量改进、风险管理10]。然而，这不应被解释为证据管理或研究--支持不需要这种规定对我们有很大的利害关系。这件事。然而，作为利益相关者，我们很容易陷入为什么使用管理数据集和其他数据集的陷阱，只从我们自己的角度来看待事情。用于“合法”研究或规划目的的档案记录，而我和德特默教授一样，对潜在的威胁表示担忧？让我们更仔细地研究一下德特默教授引用的总会计师办公室报告中提到的美国严格限制性法律或选择退出条款的后果。在立法方面，我要争辩说，我们面临的选择是好消息，办公室宣布可以接触到复杂的个人信息，而我们作为研究人员和评估者，必须获得医学研究所需的具体信息。对潜在坏消息表示的担忧的回应是，研究界担心隐私受到侵蚀。在保护隐私和自主方面没有尽同样的努力，这是保密结构的根本，因为它会造成身体和精神上的伤害。半民主社会--对整个社区有价值，美国政府问责局关注的特殊做法包括：加速，而不仅仅是对个人。承认相互审查涉及记录审查的研究，并关注社会上公共生活和私人生活之间的有益相互作用，以及如何作出放弃同意条款的决定。这至少可以追溯到亚里士多德，他认识到该报告接着引用了来自美国政府问责局的先前的研究，并且私人的维护对于个人和政治的卫生和公共服务办公室来说都是必不可少的，因为私人的地方是一般的，这些审查机构：培养美德的地方[1]。最近，我们收集和处理大量研究的能力呈指数级增长，审查太多、太快、信息太少，人们对如何获得专门知识给予了相当大的关注。以阻止对隐私的侵蚀[2]。在全球范围内，我们只对已批准的研究进行最低限度的监督，面临着两种价值观之间的冲突，每一种价值观都威胁着它们的独立性，我们非常重视隐私和改善患者健康，这对调查人员和董事会成员来说几乎没有什么培训。公开的。从基因登记的商业使用到卫生信息高速公路的发展，这一情景正在广泛的各种环境中复制[11][3-8]。看到如此强大的起诉书，从这个角度来看，我们面临的挑战变得更有影响力的机构，作为美国总会计师办公室和复杂，解决方案也是如此。对于卫生与公众服务部监察长办公室来说，虽然可能会有注销的强烈诱惑，但我们应该谨慎注意，以免失去自我保护的特权，因为这些人呼吁加强对个人健康监测的保护，以及我们如此巨大的科学独立性，试图倾听他们珍视的根本关切。可能会被证明是非常有用的。例如，我们进行了几种方式的回应。许多与专业协会和学院有联系的焦点小组正在开发或修改医疗系统，将其视为患者，以确定如何最好地建议道德准则和行为准则，以指导其成员患者参与我们正在启动的一项研究，该研究涉及家庭医生办公室中关于隐私、保密和安全原则的电子病历。作为调查人员，[12，13]。规划机构正在明确确定隐私，我们感到震惊的是，参与者高度关注保密问题，认为这是他们目前使用个人健康信息和开发信息结构以支持老年患者使用个人健康信息的重要问题，并报告了这些信息被滥用的故事，特别是出于各种规划目的的行政数据集。事件的范围从整个医疗，包括质量改进[7，14]。我们需要与我们的研究伦理委员会一起处理被转发给保险公司的事故索赔记录，以解决在美国政府问责局的报告中强调的对被医学界“贴上标签”的挑战。在机构一级，通过从一名医生到另一名医生的交流。而个人研究人员，我们需要熟悉现在国际公认的公平信息，这些人愿意获得他们的信息
used for research purposes if consulted, but expressed great Professor Detmer comments on the potential negative impact concern should the information be used without their knowof data privacy legislation on efforts to improve quality of ledge. For the majority of people, it seems, the opportunity for health care through review of administrative datasets and control over use of one’s personal information does not electronic health records. As users of health information – result in exercising that option of refusal or opting out [9, whether for policy-making, quality improvement, risk man10]. This should not, however, be interpreted as evidence agement or for research – we have a great deal at stake in supporting the lack of need for such provisions. this matter. However, as stakeholders, we can easily fall into Why would the use of administrative datasets and other the trap of seeing things only from our own perspective. archival records for ‘legitimate’ research or planning purposes While I share Professor Detmer’s concerns over the potential be considered a threat? Let us examine more closely the US consequences of severely restrictive laws or opt-out provisions General Accounting Office report cited by Professor Detmer. in legislation, I would argue that the choices we face are The good news was that the Office declared access to personcomplex and that we, as researchers and evaluators, must be specific information is necessary for medical research. The responsive to the concerns being expressed over the potential bad news was the concern that the research community for erosion of privacy. is not exercising the same diligence in the protection of Privacy and autonomy are fundamental to the fabric of confidentiality as it does physical and emotional harm. Pardemocratic society – of value to the entire community and ticular practices of concern to the GAO include: expedited not only to individuals. The recognition of the mutually review of research involving record review and concern over beneficial interplay between public and private life in society how decisions are made to waive consent provisions. The goes back at least as far as Aristotle, who recognized that report went on to cite previous studies from the GAO and the maintenance of the private is essential to both the from the Health and Human Services Office of the Inspector individual and the body politic, since the private place was General that these review bodies: where virtue was cultured [1]. With the recent exponential growth in our capacity to collect and process vast amounts ‘review too many studies too quickly and with too little of information, considerable attention has been given to how expertise’. to stem the erosion of privacy [2]. Across the globe, we are ‘conduct only minimal oversight of approved studies, face witnessing the clash between two value sets each of which conflicts of interest which threaten their independence and we hold dearly – privacy and improving the health of the provide little training for investigators and board members’. public. This scenario is being replicated across a wide variety [11] of settings from the commercial use of genetic registries to the development of health information highways [3–8]. Seen With this strong an indictment from such eminent and in this light, the challenge we face becomes much more influential bodies as the US General Accounting Office and complex, as does the solution. the Health and Human Services Office of Inspector General, While there may be a strong temptation to write-off we should take careful note, lest we lose the privilege of selfthose calling for increased protection for personal health monitoring and the scientific independence we so greatly information, an attempt to listen to their underlying concerns cherish. could prove very informative. For example, we conducted There are several ways in which we may respond. Many focus groups with people who were in contact with the professional Societies and Colleges are developing or revising medical system as patients, to determine how best to advise ethics guidelines and codes of conduct to guide their members patients of a study we were launching, involving electronic with regard to privacy, confidentiality, and security principles medical records in family physicians’ offices. As investigators, [12,13]. Planning bodies are explicitly identifying privacy and we were struck by the high degree of participant concern confidentiality as important issues to be addressed in the over the current use of their personal health information and development of infostructures to support the use of adby the stories of misuse of that information, particularly ministrative datasets for a variety of planning purposes, among older patients. Incidents ranged from entire medical including quality improvement [7,14]. We need to work records being forwarded to insurers over accident claims to with our research ethics boards to address the challenges concerns over being ‘labelled’ by the medical community highlighted in the GAO report. At the level of the institution through communications from one physician to another. and the individual researcher, we need to become fluent with what are now internationally recognized fair information These same people were willing to have their information