Healthcare provision and medical research are increasingly dependent on electronic collection and distribution of information. Being able to move data in this way brings benefits for healthcare and society, but introduces new risks associated with improper access to data, or use of data beyond current societal expectations.
This research project explores public attitudes towards data governance (systems and structures put in place to manage data, including decision making processes for data sharing, access and security), with a view to ascertaining appropriate regulatory mechanisms for managing use of health data for multiple purposes, beyond clinical care.
Explore what citizens perceive to be the risks and benefits when they volunteer information in different circumstances; their expectations about data use and data governance mechanisms, along with the factors that shape their decision making;
Investigate whether current laws, regulations and policies appropriately protect health data;
Develop recommendations aimed at ensuring that the use of health data in cyberspace meets social expectations regarding purpose of use and the security and privacy of the data.
This work is being led by researchers based at the University of Oxford in collaboration with colleagues at the University of Oslo, Uppsala University and the University of Iceland. It is supported by a research grant awarded by NordForsk [grant number 81105] and the Economic and Social Research Council (part of UK Research and Innovation).