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Paper short abstract

This paper discusses tensions between the promises of empowered patienthood in the context of medical digital twins and the current passive roles assigned to patients. By proposing a socio-technical lens, it highlights the need for cross-disciplinary reflection on underlying values and assumptions.

Paper long abstract

This paper reflects on institutional aspirations of digital patienthood in the development and implementation of digital twins in healthcare settings. Medical digital twins are presented as personalized and dynamic computational representations of human health and disease states. Drawing on empirical observations from extensive focus group conversations with modelers involved in different European research projects on digital twins, this paper explores observed tensions between future ‘empowered’ visions of digital patienthood and the current ‘data subject’ roles afforded to patients.

In anticipatory dialogues, medical digital twins are introduced in terms of their transformative power, promising to reshape what it means to be, and through predictive modeling, to become a patient. The tools promise to render care relationships more equal and enable patients’ active participation in decision-making. However, this contrasts sharply with current practices, where patients, perceived as ‘fallible’, occupy rather passive, data-contributing roles, with limited agency in shaping research agendas or model design. Largely, these apparent misalignments between practice and vision go unnoticed by developers, which raises important questions around their understanding of ‘empowerment’ and how this translates into engagement practices.

This paper adopts a socio-technical perspective to reveal, understand, and reflect on how not only technical and economic constraints, but also institutional assumptions and underlying values co-shape the extent and nature of patient involvement in medical digital twin research. This work explores what being ‘empowered’ entails from the perspective of those developing the technologies, and reflects on how these visions shape concrete engagement practices and the future organization of patient involvement.