The livEs of Real woRld dAta (TERRA)

Real-world data (RWD) refer to routinely collected data relating to patients health status 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. Many of these RWD came from Israel and its data repositories. 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. In other words, producing RWD means representing, and enacting, versions of the real-world, while creating populations.

Taking Israel as an empirical case study, TERRA aims to crack open the concept of RWD.

Combining a literature review and an ethnographic study, TERRA has four objectives: 1) To map the emergence of the concept of RWD; 2) To develop an empirical analysis of the production, curation, uses and governance of RWD;3) To build a conceptual framework to understand and theorize the making of population and value through RWD; 4) To deliver a series of innovative dissemination events aimed at engaging the public and key stake-holders with RWD and its implications for practice.

As lives are being datafied through RWD, we must critically investigate how such data are produced from individuals bodies.

Specifically, when data are understood to capture the real-world, we must interrogate what and who is represented through these data, because this shapes who can be treated and governed, with what, and in which ways.