DataSpace · Data Spaces: Making Sense of Health in an Age of Cross-Border Data Infrastructures

DataSpace proposes a new conceptualization of how the pursuit of health is shaped by data. Healthcare is increasingly datafied and a wide range of actors – patients, clinicians, administrators, policymakers and industry – want to be able to exchange and access health data across national boundaries. Competing initiatives for fostering cross-border data integration proliferate, and the EU provides major investments, e.g. through the European Health Data Space. These massive investments will influence healthcare, administration and research, but we do not know how. DataSpace explores what is driving the establishment of cross-border health-data infrastructures, which types of infrastructures are being established, with which implications for whom, and what comes to be included and acted upon in relation to health, organizational performance, and health policy. Furthermore, these investments emerge in tandem with wider social changes where data have become constitutive for the lives we can live. With DataSpace we therefore explore and conceptualize how people experience themselves and the world around them with and through data. We take the term ‘space’, empirically present in the EHDS initiative, and reinvigorate it theoretically to establish a vocabulary fitted for understanding data-intensive health environments. We suggest seeing data spaces as having both formative and experiential dimensions and explore how they interact. Concerning the formative dimensions, data spaces are enacted through promises, work, and users. Four experiential dimensions relate to what is experienced as right (legally and morally), true (epistemologically), present (phenomenologically) and valuable (economically, emotionally, and socially). This theoretical approach moves beyond problematic distinctions between the virtual and the real and provides a new understanding of how patients, clinicians, researchers, administrators, and industry shape healthcare with and through data.