Governance of Health Data in Cyberspace

在21世纪，成功的医疗保健提供和医学研究越来越依赖于网络空间信息的收集和分发，这可能会给社会带来巨大的好处；然而，与滥用数据相关的风险是巨大的。冰岛、瑞典、挪威和英国提供了案例研究，说明由于未能完全理解社会对在线健康数据使用的期望，这些举措引发了公众的强烈抗议。我们的理论是，当出于健康原因收集的数据被用于其他情况，或者为其他目的收集的数据被用于医疗保健的情况下，边界被打破。这挑战了数据？S的背景完整性(即考虑到出于特定原因收集的数据所关联的特定价值观和期望，以及如果收集数据的原因或情况发生变化，它们将如何变化)，因此可能威胁到公众的信任。该项目的中心目标是为卫生网络空间的弹性治理机制制定建议，以满足社会对卫生数据安全和隐私的期望，同时使卫生数据能够广泛使用以造福社会。我们将运用背景完整性的理论视角，审查其他部门目前的治理方法，以及在线数据出现的伦理问题。这将使我们能够分析某些数据的使用是否违反特定背景下的规范，从而分析目前的治理机制是否适当，或者是否需要新形式的公众参与和治理。这一跨学科项目将使用多种方式来了解北欧卫生网络空间治理中的风险和复原力问题。这将包括与专家和公民一起使用焦点小组，以及一个离散选择实验，在这个实验中，我们要求参与者在设定的回答中进行选择。从这些结果中，我们将了解当数据被用于健康网络空间时，公民认为他们的风险是什么。利用这些发现，我们将为网络空间的治理、医疗保健和其他部门的利益制定建议。

In the 21st century, successful healthcare delivery and medical research are increasingly dependent on the collection and distribution of information in cyberspace, with potentially enormous benefits for society; however the risks associated with misuse of data are significant. Iceland, Sweden, Norway and the UK provide case studies of where initiatives have raised public outcry because of a failure to fully comprehend social expectations about the use of health data online. Our theory is that when data collected for health reasons is used in other contexts, or data collected for other purposes is used in the context of healthcare, a boundary is breached. This challenges the data?s contextual integrity (that is, considering the specific values and expectations linked to data collected for a particular reason and how they change if the reason or situation for collecting data changes), and thus may threaten public trust. The central aim of this project is to develop recommendations for resilient governance mechanisms for health cyberspace that can meet social expectations regarding the security and privacy of health data, while enabling broad use of health data to benefit society. We will apply the theoretical lens of contextual integrity, and review current approaches to governance across other sectors, along with the ethical issues that arise with online data. This will enable us to analyse whether certain data usage contravenes the norms of a particular context, and therefore whether current governance mechanisms are appropriate, or if new forms of public engagement and governance are needed. This inter-disciplinary project will use a variety of ways to understand the issues of risk and resilience in the governance of health cyberspace in Northern Europe. These will include using focus groups with experts and citizens and a discrete choice experiment in which we ask participants to choose between set responses. From the results of these we will obtain an understanding of what citizens perceive their risk to be when data is used in health cyberspace. Using these findings we will develop recommendations for governance in cyberspace, for the benefit of healthcare and other sectors.