Limits of data anonymity: lack of public awareness risks trust in health system activities

Abstract

AbstractPublic trust is paramount for the well functioning of data driven healthcare activities such as digital health interventions, contact tracing or the build-up of electronic health records. As the use of personal data is the common denominator for these healthcare activities, healthcare actors have an interest to ensure privacy and anonymity of the personal data they depend on. Maintaining privacy and anonymity of personal data contribute to the trustworthiness of these healthcare activities and are associated with the public willingness to trust these activities with their personal data. An analysis of online news readership comments about the failed care.data programme in England revealed that parts of the public have a false understanding of anonymity in the context of privacy protection of personal data as used for healthcare management and medical research. Some of those commenting demanded complete anonymity of their data to be willing to trust the process of data collection and analysis. As this demand is impossible to fulfil and trust is built on a false understanding of anonymity, the inability to meet this demand risks undermining public trust. Since public concerns about anonymity and privacy of personal data appear to be increasing, a large-scale information campaign about the limits and possibilities of anonymity with respect to the various uses of personal health data is urgently needed to help the public to make better informed choices about providing personal data.