Governance in health data in cyberspace
HeLEX has just been awarded € 1.163.169 for a socio-legal project called the “Governance of Health Data in Cyberspace”.
Outline of Project
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 contextual integrity of the data (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 research team will conduct an international empirical study to understand what privacy and data protection oversight and governance mechanisms people would like to have in place when their medical information is used for multiple research purposes.