Chan Tom, Di Iorio Concetta Tania, De Lusignan Simon, Lo Russo Daniel, Kuziemsky Craig, Liaw Siaw-Teng
University of Surrey.
Serectrix s.n.c.
J Innov Health Inform. 2016 Dec 20;23(3):627-632. doi: 10.14236/jhi.v23i3.909.
Sharing health and social care data is essential to the delivery of high quality health care as well as disease surveillance, public health, and for conducting research. However, these societal benefits may be constrained by privacy and data protection principles. Hence, societies are striving to find a balance between the two competing public interests. Whilst the spread of IT advancements in recent decades has increased the demand for an increased privacy and data protection in many ways health is a special case. UK are adopting guidelines, codes of conduct and regulatory instruments aimed to implement privacy principles into practical settings and enhance public trust. Accordingly, in 2015, the UK National Data Guardian (NDG) requested to conduct a further review of data protection, referred to as Caldicott 3. The scope of this review is to strengthen data security standards and confidentiality. It also proposes a consent system based on an "opt-out" model rather than on "opt-in.Across Europe as well as internationally the privacy-health data sharing balance is not fixed. In Europe enactment of the new EU Data Protection Regulation in 2016 constitute a major breakthrough, which is likely to have a profound effect on European countries and beyond. In Australia and across North America different ways are being sought to balance out these twin requirements of a modern society - to preserve privacy alongside affording high quality health care for an ageing population. Whilst in the UK privacy legal framework remains complex and fragmented into different layers of legislation, which may negatively impact on both the rights to privacy and health the UK is at the forefront in the uptake of international and EU privacy and data protection principles. And, if the privacy regime were reorganised in a more comprehensive manner, it could be used as a sound implementation model for other countries.
共享健康和社会护理数据对于提供高质量医疗保健、疾病监测、公共卫生以及开展研究至关重要。然而,这些社会效益可能会受到隐私和数据保护原则的限制。因此,社会各界正在努力在这两种相互竞争的公共利益之间找到平衡。虽然近几十年来信息技术的进步在许多方面增加了对加强隐私和数据保护的需求,但健康领域却是一个特殊情况。英国正在采用指导方针、行为准则和监管工具,旨在将隐私原则落实到实际环境中,并增强公众信任。因此,2015年,英国国家数据监护人(NDG)要求对数据保护进行进一步审查,即“考迪克特3”审查。此次审查的范围是加强数据安全标准和保密性。它还提出了一种基于“选择退出”模式而非“选择加入”模式的同意系统。在欧洲乃至国际上,隐私与健康数据共享之间的平衡并非一成不变。2016年新的欧盟数据保护条例的颁布是一个重大突破,可能会对欧洲国家及其他地区产生深远影响。在澳大利亚和北美各地,人们正在寻求不同的方法来平衡现代社会的这两项双重要求——在为老龄化人口提供高质量医疗保健的同时保护隐私。虽然在英国,隐私法律框架仍然复杂,分散在不同层次的立法中,这可能会对隐私权和健康权产生负面影响,但英国在采纳国际和欧盟隐私及数据保护原则方面处于领先地位。而且,如果以更全面的方式重组隐私制度,它可以作为其他国家完善的实施模式。