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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”. This involves 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. The Society, Integrity and Cyber-security” call attracted 28 eligible proposals by the deadline 15 March 2016. The decision was made by the NordForsk Board on the 6 October 2016, following external peer review and funding recommendations from the Joint Programme Committee of the Nordic Societal Security Programme, including the Economic and Social Research Council (ESRC), Swedish Civil Contingencies Agency (MSB), Norwegian Directorate for Civil Protection (DSB), Research Council of Norway (RCN), Academy of Finland (AKA), The Icelandic Centre for Research (Rannís), Netherlands Organisation for Scientific Research (NWO) and NordForsk.


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.

This involves 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. The Society, Integrity and Cyber-security” call attracted 28 eligible proposals by the deadline 15 March 2016. The decision was made by the NordForsk Board on the 6 October 2016, following external peer review and funding recommendations from the Joint Programme Committee of the Nordic Societal Security Programme, including the Economic and Social Research Council (ESRC), Swedish Civil Contingencies Agency (MSB), Norwegian Directorate for Civil Protection (DSB), Research Council of Norway (RCN), Academy of Finland (AKA), The Icelandic Centre for Research (Rannís), Netherlands Organisation for Scientific Research (NWO) and NordForsk. 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.