Governance of Health Data in Cyberspace

世纪，成功的医疗保健服务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利益;然而，与数据滥用相关的风险也很大。冰岛、瑞典、挪威和英国提供了案例研究，说明由于未能充分理解社会对使用在线健康数据的期望，哪些举措引起了公众的强烈抗议。我们的理论是，当出于健康原因收集的数据用于其他情况下，或出于其他目的收集的数据用于医疗保健的情况下，边界被打破。这是对数据的挑战吗？环境的完整性（即考虑与出于特定原因收集的数据相关的具体价值和期望，以及如果收集数据的原因或情况发生变化，这些价值和期望将如何变化），因此可能威胁到公众的信任。该项目的中心目标是为健康网络空间的弹性治理机制提出建议，这些机制能够满足社会对健康数据安全和隐私的期望，同时能够广泛使用健康数据造福社会。我们将应用上下文完整性的理论透镜，并审查当前的方法，以治理在其他部门，沿着的道德问题，出现与在线数据。这将使我们能够分析某些数据的使用是否违反了特定背景下的规范，从而分析当前的治理机制是否合适，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各种方式来了解北方卫生网络空间治理中的风险和复原力问题。这些将包括使用焦点小组与专家和公民和离散选择实验中，我们要求参与者选择之间的设置响应。从这些结果中，我们将了解当数据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提出建议，以造福于医疗保健和其他部门。

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.