The role of data custodians in establishing and maintaining social licence for health research

Abstract

In this article we explore the role of data custodians in establishing and maintaining social licence for the use of personal information in health research. Personal information from population-level data collections can be used to make significant contributions to health and medical research, but this use is dependent on community acceptance or a social licence. We conducted semi-structured interviews with data custodians across Australia to better understand data custodians' views on their roles and responsibilities. This inductive, thematic analysis of the interview data focuses on three factors that contribute to social licence - reciprocity, non-exploitation and the public good. While the data custodians interviewed did not explicitly frame their role in the context of social licence, their descriptions of their roles and responsibilities clearly indicated that they did have some role to play in building and maintaining social licence.

Keywords: big data; data custodian; non-exploitation; public good; reciprocity; social licence.