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 (EuroSciVoc)
CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: The European Science Vocabulary.
CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: The European Science Vocabulary.
- social sciences sociology governance
- natural sciences computer and information sciences databases
- medical and health sciences health sciences public health epidemiology pandemics
- medical and health sciences basic medicine pharmacology and pharmacy pharmaceutical drugs vaccines
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Keywords
Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)
Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)
Programme(s)
Multi-annual funding programmes that define the EU’s priorities for research and innovation.
Multi-annual funding programmes that define the EU’s priorities for research and innovation.
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HORIZON.1.2 - Marie Skłodowska-Curie Actions (MSCA)
MAIN PROGRAMME
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Topic(s)
Calls for proposals are divided into topics. A topic defines a specific subject or area for which applicants can submit proposals. The description of a topic comprises its specific scope and the expected impact of the funded project.
Calls for proposals are divided into topics. A topic defines a specific subject or area for which applicants can submit proposals. The description of a topic comprises its specific scope and the expected impact of the funded project.
Funding Scheme
Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.
Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.
HORIZON-TMA-MSCA-PF-EF - HORIZON TMA MSCA Postdoctoral Fellowships - European Fellowships
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Call for proposal
Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.
Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.
(opens in new window) HORIZON-MSCA-2022-PF-01
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Net EU financial contribution. The sum of money that the participant receives, deducted by the EU contribution to its linked third party. It considers the distribution of the EU financial contribution between direct beneficiaries of the project and other types of participants, like third-party participants.
84105 Beer Sheva
Israel
The total costs incurred by this organisation to participate in the project, including direct and indirect costs. This amount is a subset of the overall project budget.