Understanding the Security and Privacy Concerns About the Use of Identifiable Health Data in the Context of the COVID-19 Pandemic: Survey Study of Public Attitudes Toward COVID-19 and Data-Sharing.
Charlotte SummersAnne-Marie SlowtherJonathan CaveArjun PanesarPublished in: JMIR formative research (2022)
Although our survey focused mainly on the views of those living with chronic health conditions, the results indicate that data sensitivity is highly contextual. More people are more comfortable with sharing anonymized data rather than personally identifiable data. Willingness to share data also depended on the receiving body, highlighting trust as a key theme, in particular who may have access to shared personal health data and how they may be used in the future. The nascency of legal guidance in this area suggests a need for humanitarian guidelines for data responsibility during disaster relief operations such as pandemics and for involving the public in their development.