Abstract

This paper seeks to explore a paradox at the heart of Big Data and AI which is that while there is a growing quantification of all aspects of human vitality from the molecular level to our shopping habits, there are still significant domains of human existence that escape their translation into the analytic gaze of statistics or Big Data. We would like to highlight some of the global power differentials through which some populations become the focus of statistical knowledge or Big Data initiatives while others do not. In the context of this paper, we want to focus on the example of rare diseases to illustrate the historical and contemporary selectivity with which this population becomes the subject of public or private data initiatives. While Big Data initiatives offer the promise to understand aspects of human existence in novel ways, these initiatives are costly and require highly specialized expertise. In this paper we want to focus on how the use of widely available tools such as Google Surveys and Microsoft Excel enables patients’ organizations in a middle-income country such as Chile to produce robust quantitative and qualitative knowledge of patients and carers living with a rare disease in this country. Using the experience of the Federación Chilena de Enfermedades Raras (FECHER: Chilean Federation of Rare Diseases) in developing the first national survey of rare diseases in Chile, we want to explore how patients’ organizations can produce knowledge and an evidence base that is relevant to shaping health policy debates in Chile. The guiding concepts that inform our discussion of the role of patients’ organizations in developing data in relation to populations living with a rare disease are the political economy of hope and biological citizenship