Public Trust, Deliberative Engagement and Health Data Projects: Beyond Legal Provisions

Abstract

In England, a new scheme for collating and sharing General Practitioners’ data has faced resistance from various quarters and has been deferred twice. While insufficient communication and ambiguous safeguards explain the widespread dissatisfaction expressed by the public and experts, we argue how dwindling public trust can be the most damaging variable in this picture - with implications not only for this scheme, but for any future project that aims to mobilise health data for medical research and innovation. We also highlight the indispensability of deliberative public engagement on the values being prioritised in health data initiatives, the significance of securing social license in addition to legal assurances, and the lessons in it of global pertinence.