Governance of Health Data in Cyberspace

The central aim of this project is to develop recommendations for resilient governance mechanisms for health cyberspace that can meet social expectations regarding the security and privacy of health data, while enabling broad use of health data to benefit society. We will apply the theoretical lens of contextual integrity, and review current approaches to governance across other sectors, along with the ethical issues that arise with online data.

This will enable us to analyse whether certain data usage contravenes the norms of a particular context, and therefore whether current governance mechanisms are appropriate, or if new forms of public engagement and governance are needed. 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 we ask participants to choose between set responses. From the results of these we will obtain an understanding of what citizens perceive their risk to be when data is used in health cyberspace. Using these findings we will develop recommendations for governance in cyberspace, for the benefit of healthcare and other sectors

Vitenskapelige publiseringer

Data source: Crossref. The list should not be assumed to represent the complete published research output of the project.

Balancing Protection and Free Movement of Personal Data: The New European Union General Data Protection Regulation

Journal Article published 2019-02-19 in Annals of Internal Medicine volume 170 issue 5
Research funded by NordForsk | Norges Forskningsråd | The Clinical Effectiveness Research Group | Frontier Science and Technology Research Foundation
Authors: Heidi Beate Bentzen, Njål Høstmælingen.

Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation?

Journal Article published 2019-02-12 in Annals of Internal Medicine volume 170 issue 5
Research funded by Horizon 2020 | Division of Computer and Network Systems | Fonds Wetenschappelijk Onderzoek | Norges Forskningsråd | Uppsala Universitet | Stiftelsen Kristian Gerhard Jebsen | NordForsk | FP7 Health | European Cooperation in Science and Technology | Ministarstvo Prosvete, Nauke i Tehnološkog Razvoja | Department of Innovation, Research and Universities of the Autonomous Province of Bolzano-South Tyrol (Italy)
Authors: Deborah Mascalzoni, Heidi Beate Bentzen, Isabelle Budin-Ljøsne, Lee Andrew Bygrave, Jessica Bell, Edward S. Dove, Christian Fuchsberger, Kristian Hveem, Michaela Th. Mayrhofer, Viviana Meraviglia, David R. O'Brien, Cristian Pattaro, Peter P. Pramstaller, Vojin Rakic, Alessandra Rossini, Mahsa Shabani, Dan Jerker B. Svantesson, Marta Tomasi, Lars Ursin, Matthias Wjst, Jane Kaye.
Fakta om prosjektet

Project number: 81105

Prosjektleder

Jane Kaye,  Centre for Health, Law and Emerging Technologies (HeLEX), University of Oxford

 

Varighet
2017-2021