Social life of HIV data

Data are central to public health and to the management of infectious diseases like HIV. There are ongoing tensions over what information to generate and store, how to measure variables, who gets to analyse and approve results, and to what extent data reflect reality. This review provides an overview of key concepts for understanding the social life of HIV public health data in relation to HIV: the transformation of life into different kinds of value (datafication); predatory extractive practices with data (data colonialism); social justice, equity and data governance concerns for marginalised groups (data sovereignty and data justice); individual and organisational conditions and proficiencies with data (data capabilities); how data recursively shape social worlds (data performativity); and the principle of ongoing self-reflection about data processes by those who work with data (reflexivity). As public health programmes strive towards greater granularity and specificity of HIV data, this article calls for critical attention to the 'social life of HIV data', which urges ethical and reflexive HIV data practice by centring the processes by which HIV data are generated, given meaning and acquire social force in myriad contexts.