Fiske, Amelia; Degelsegger-Márquez, Alexander; Marsteurer, Brigitte; Prainsack, Barbara (2022): Value‑creation in the health data domain: a typology of what health data help us do. BioSocieties.

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It has become a trope to speak of the increasing value of health data in our societies. Such rhetoric is highly performative: it creates expectations, channels and justifies investments in data technologies and infrastructures, and portrays deliberations on political and legal issues as obstacles to the flow of data. Yet, important epistemic and political questions remain unexamined, such as how the value of data is created, what data journeys are envisioned by policies and regulation, and for whom data types are (intended to be) valuable. Drawing on two empirical cases, (a) interviews with physicians on the topic of digital selfcare, and (b) expectations of stakeholders on the use of Real-World Data in clinical trials, as well as existing literature, we propose a typology of what health data help us to do. This typology is intended to foster refection about the different roles and values that data use unfolds. We conclude by discussing how regulation can better accommodate practices of valuation in the health data domain, with a particular focus on identifying regulatory challenges and opportunities for EU-level policy makers, and how Covid-19 has shed light on new aspects of each case.

Item Type: Article
Uncontrolled Keywords: health data, real-world data, STS, valuation studies
Subjects: GOEG Allgemein
Internationales, Policy, Evaluation und Digitalisierung
Date Deposited: 08 Sep 2022 11:56
Last Modified: 27 Apr 2023 11:20