Governance of Health Data in Cyberspace
The CyberHealth project considers the question as to what governance mechanisms may inspire trust and resilience in the storage and use of health data in cyberspace.
About the Project
The CyberHealth project considers the question as to what governance mechanisms may inspire trust and resilience in the storage and use of health data in cyberspace. It has five main objectives:
- To identify governance mechanisms that anticipate, assess and prevent the risks of using health data in cyberspace, as well as respond and recover quickly to adverse events and that can inspire public confidence;
- To identify overarching ethical principles that should govern the production, storage and sharing of health data across jurisdictions and could guide the development of governance mechanisms to support the purpose limitation principles and the oversight of secondary use of health data in cyberspace;
- To use focus groups to identify what citizens perceive their risk to be when health data is used in cyberspace; when they consider contextual integrity to be breached; and whether they think the current governance structures are appropriate for cyberspace and what governance structures should be in place;
- To investigate stakeholders’ preferences using a discrete choice experiment based on case studies from selected countries to determine what governance structures should be in place for health data in cyberspace, paying particular attention to the heterogeneity in preferences based on differences in choice context, demographics and psychosocial characteristics;
- To identify innovative governance mechanisms that can both meet social expectations regarding security and privacy of health data, and enable broad use of such data for a variety of purposes that may benefit society.
The project runs for three and a half years, commencing in October 2017.
NordForsk funds the Project.
The project is led by the University of Oxford. The NRCCL is primarily tasked with undertaking the legal analysis involved. Other partner institutions are Uppsala University and University of Iceland.