Branco Weiss Fellow Since
2023
Research Category
Science and Technology Studies
Research Location
Department of Sociology and Anthropology, Ben-Gurion University of the Negev, Beer Sheva, Israel
Background
In the era of Big Data, our lives are increasingly being datafied. Healthcare systems, self-tracking apps and commercial platforms produce, collect and analyze vast amounts of data about our lives, bodies and health. These datafication processes shape healthcare delivery, scientific practices, and the knowledge produced about the world. In this fellowship, Dr. Pinel critically examines the social, political and ethical implications of the datafication of health by focusing on the study of ‘Real-World Data’ (RWD). RWD refer to routinely collected data relating to patients’ health and the delivery of health care originating from a range of sources other than traditional clinical trials. Electronic health records, patient registries or personal information collected from wearable devices are all examples of RWD. The Covid-19 pandemic saw the expansive use of RWD. Governments used these data to monitor populations’ health, while industry and drug regulators relied on RWD to assess the effectiveness of Covid-19 vaccines. However, constructing the ‘real-world’ through data is not a simple task. Producing data takes work from database curators, researchers or policy-makers, while it entails making decisions about what and who to include in the data to represent the ‘real-world’. What and who is represented through these data shapes who can be treated and governed and in which ways. In other words, producing RWD means representing, and enacting, versions of the ‘real-world’, while creating populations. Crucially, knowledge, policies and commercial deals are made on the basis of such data, and thus, what value is created, and for whom, depends on what is made visible through the data produced. As RWD gain in popularity, we must investigate how RWD are produced from individuals’ bodies and utilized as resources in medicine and policy. This project aims to do just that. The overarching aim of this fellowship is to build an empirical and theoretical basis to explore the production and uses of RWD and to understand the making of population and value through data.
Details of Research
Dr. Clémence Pinel takes Israel and its data repositories as an empirical case study. In January 2021, as the first vaccines against Covid-19 were coming to the market, Israel signed an agreement with pharmaceutical company Pfizer. It guaranteed Israel the quick delivery of vaccines, while in exchange, Pfizer was given access to an important set of Real-World Data (RWD) in the form of medical statistics. The Israel-Pfizer agreement effectively turned Israel and its population into a real-life cohort on which data were accumulated and studied. Using this case as the backdrop for the fellowship, and drawing on theoretical tools from Science and Technology Studies, Political Science, and Anthropology, Dr. Pinel aims to crack open the concept of RWD and trace its implications for policy and practice. Methodologically, the fellowship combines a review of policy and scientific literature to clarify what is meant by the concept of RWD and trace its uses, together with an ethnographic study, using participant observation and semi-structured interviews, across four sites involved in producing, utilizing and governing RWD in Israel. As a whole, Dr. Pinel aims to achieve three research objectives:
- To trace the emergence of the concept of RWD and document its uses in policy and practice;
- To develop an empirical analysis of the production, curation, uses and governance of RWD;
- To build a conceptual framework to understand and theorize the making of population and value through RWD.
