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

Introduction

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.

Objectives

DataSpace explores what is driving the establishment of cross-border health-data infrastructures. The project aims to address the following key questions:

1. Which types of infrastructures are being established?
2. What are the implications for various stakeholders?
3. What comes to be included and acted upon in relation to health, organizational performance, and health policy?

Contextual Factors

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.

Theoretical Framework

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.

Dimensions of Data Spaces

We suggest seeing data spaces as having both formative and experiential dimensions and explore how they interact.

Formative Dimensions

Concerning the formative dimensions, data spaces are enacted through:

• Promises
• Work
• Users

Experiential Dimensions

Four experiential dimensions relate to what is experienced as:

1. Right (legally and morally)
2. True (epistemologically)
3. Present (phenomenologically)
4. Valuable (economically, emotionally, and socially)

Conclusion

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.