Theory and conceptualisation of public trust in the health care system:Three English case studies: care.data, biobanks and 100,000 Genomes Project

Abstract

There is little research into the understanding, protection and recovery of public trust in health care systems, considering the underlying importance of public trust, not only for the effective functioning of health care systems, but also for society in general. There is no robust conceptual framework of public trust. This poses problems for policy making and public trust measurement. Therefore, research is needed to identify what public trust in the health care system means. This research will not only inform health policy making, but should also allow the development of a public trust measure in the future. Hence, the aim of this research is to gain deeper understanding of what public trust in health care systems at the macro level is, and to close a theory and conceptual gap. Furthermore, this research aims to determine whether public trust is measurable. To fulfil the research aim, three qualitative case studies of the English NHS were conducted: an analysis of online news with readership comments concerning care.data; a secondary analysis of interviews about participants’ experiences and perceptions of biobanks in general; and an analysis of public focus groups about perceptions of the 100.000 Genomes Project in particular. Further, existing measurement instruments and their conceptual frameworks, as well as general trust theory, were reviewed. Based on these elements, public trust theory and a conceptual framework of public trust were developed. The findings suggest that public trust grows in the public sphere from open public discourse and as a result legitimises the actions of the health care system. Public trust builds on information equally relating to past experiences, present perceptions and future expectations. Public trust is established in anticipation of a net benefit for the public as well as the system. With respect to the measurability of public trust, this research suggests that public trust can be measured.