Smartwatches that monitor your heart rate and sleep, apps that track menstrual cycles, and digital health records. Increasingly, our health data is being registered digitally. But who decides how this data is used? To explore how individuals and institutions collaborate in making collective decisions regarding the use of health data, Enrique Santamaría Echeverría, Assistant Professor Innovation of Public Law at Erasmus School of Law, has been awarded a Veni grant by the Dutch Research Council (NWO). With this prestigious personal grant, he will dedicate the next three years to researching the legal framework for the collective governance of health data through his project:“Collective Governance of Health Data: Towards More Democratic and Inclusive Models.”
The use of health data: who gets to decide?
The timing of the Veni project is no coincidence. Santamaría Echeverría explains:
“This project builds on my previous work, but it also responds to a growing societal debate about the use of health data for research and algorithmic training. The increasing impact of digitalisation raises questions such as: Who has the power to decide how health data are used, and under what conditions? Should these decisions rest with individuals, corporations, or the state?”
Santamaría Echeverría’s vision for the coming three years is clear: “Grounded in the belief that health data governance should be guided by democratic principles, my goal is to develop a framework that helps answer these pressing questions.”
Amplifying voices
“This project is designed to generate both scientific and societal impact,” Santamaría Echeverría notes. On the academic front, he aims to bring together legal and interdisciplinary insights. “I seek to integrate diverse strands of scholarship, from the literature on the commons and private law to data governance, to better understand health data cooperatives and data collaboratives (HDCCs). This includes an innovative empirical study of HDCCs in practice,” he explains.
“On the societal side,” he continues, “I seek to identify the needs of citizens, patients, and HDCCs, to amplify their voices, and, where appropriate, to develop (policy) recommendations that support democratic and inclusive approaches to health data governance.”
About the Veni grant
The Veni grant is part of the NWO Talent Programme (Veni, Vidi, Vici). Each of the three grants is tailored to different phases in researchers’ scientific careers. Veni offers exceptional researchers who have recently obtained their PhD the opportunity to further develop their expertise, conduct independent research, and refine their ideas over a period of three years.
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Learn more about the NWO Talent Programme here.
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