Abstract
Public 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.
Highlights
Common public and professional agreement exists, that high levels of trust are critical for the well-function of data driven activities within health systems (Lawler et al 2018)
Trust is a relational construct where data donors trust the health system with their data in anticipation of a net-benefit for the health system, the donor and society (Gille et al 2020). Examples of such trust relationships are the build-up of electronic health records to be able to improve health management and quality of care
As the use of personal data is the common denominator for these health system activities, all of them have an interest to ensure privacy and anonymity of the personal data they depend on
Summary
Common public and professional agreement exists, that high levels of trust are critical for the well-function of data driven activities within health systems (Lawler et al 2018). We observed in previous research on public trust in the English health system a tension between the limits of data anonymity and the rigorous expectations of parts of the public that their data have to be completely anonymised throughout its use both for the analysis of health service performance and medical research (Gille et al 2020).
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