Privacy as Articulation Work in HIV Health Services

Abstract

Normative accounts on health information privacy often highlight the importance of regulating data sharing. Yet, little attention has been paid to how health professionals perform and negotiate privacy practices in highly multidisciplinary, technologically-mediated medical work. This paper examines information privacy practices in two HIV outpatient clinics based in two NHS hospitals in London (UK). Methods include 46 semi-structured interviews, primarily with health professionals and technology developers, ethnographic observation and document analysis. Drawing on an empirically informed understanding of privacy as 'articulation work', we focus on the indeterminate nature of information privacy practices and examine the work required to translate privacy, from a normative professional duty to an enacted medical practice. This analysis also highlights the invisibility of privacy practices and their coordinating role in delivering technologically-supported medical care. The paper ends with a discussion of implications for practice and technology design.