Social Licence for Uses of Health Data

A Report on Public Perspectives

Building on a decade of research into publicly supported uses of health data, Social Licence for Uses of Health Data: A Report on Public Perspectives adds the voices of 20 experienced public and patient advisors to the discussion about what uses and users of health data have “social licence.” “Social licence” describes which uses and users of health data members of the public support, and under what conditions. Through a facilitated deliberative process, participants explored concerns related to privacy, commercial motives, equity and fairness. Despite many disagreements, they reached agreement on some scenarios where health data use has social licence and certain cases that it did not.