Governance of Health Data in Cyberspace
University of Iceland – School of Social Sciences and School of Humanities–
Faculty of Sociology, Anthropology and Folkloristics or Faculty of History and Philosophy
The University of Iceland School of Social Sciences in cooperation with the School of Humanities present a three year PhD project “Governance of Health Data in Cyberspace”, funded by Nordforsk.
The project leaders in Iceland are Guðbjörg Andrea Jónsdóttir, director of the Social Science Research Institute and Salvör Nordal, former director of the Centre for Ethics at the University of Iceland. The overall research project is led by Jane Kaye, director of HeLEX, Nuffield Department for Population Health, Medical Sciences Division, University of Oxford. Other institutions participating in the project are Centre for Research Ethics and Bioethics, Uppsala University and Department of Private Law, University of Oslo.
The aim of the research project “Governance of Health Data in Cyberspace” is to develop recommendations for resilient governance mechanisms for cyberhealth. 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.
The research project will collect case studies from Iceland, Sweden, Norway and the UK where initiatives have raised public outcry because of a failure to fully comprehend social expectations about the use of health data online.
The 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 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 participants are asked to choose between set responses. From the results of these an understanding of what citizens perceive their risk to be when data is used in health cyberspace will be gained. Using these findings recommendations for governance in cyberspace will be developed, for the benefit of healthcare and other sectors.