Project description
Exploring real-world data production, governance
There is nothing simple about the production, curation, analysis and governance of data relating to patients’ health status and healthcare delivery. With the support of the Marie Skłodowska-Curie Actions programme, the TERRA project aims to explore the complex dynamics of this real-world data (RWD) production, curation, uses and governance. It will take Israel as a case study. The project will consider the production of RWD, which requires making decisions about what and who to include in the data. These are factors that shape the representation and governance of populations. The TERRA project seeks to develop a conceptual framework for understanding the making of population and value through RWD and engage stakeholders in discussions about its implications for practice.
Objective
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.
Fields of science
- natural sciencescomputer and information sciencesinternetinternet of things
- social sciencessociologygovernance
- natural sciencescomputer and information sciencesdatabases
- medical and health scienceshealth sciencesinfectious diseasesRNA virusescoronaviruses
- medical and health sciencesbasic medicinepharmacology and pharmacypharmaceutical drugsvaccines
Programme(s)
- HORIZON.1.2 - Marie Skłodowska-Curie Actions (MSCA) Main Programme
Funding Scheme
MSCA-PF - MSCA-PFCoordinator
84105 Beer Sheva
Israel