健康数据领域的价值创造:健康数据帮助我们做什么的类型学

IF 1.3 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL
Amelia Fiske, Alexander Degelsegger-Márquez, Brigitte Marsteurer, Barbara Prainsack
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引用次数: 0

摘要

在我们的社会中,健康数据的价值与日俱增,这已成为一种说法。这种言论具有很强的表演性:它创造了人们的期望,引导并证明了对数据技术和基础设施的投资,并将对政治和法律问题的讨论描绘成数据流动的障碍。然而,重要的认识论和政治问题仍未得到研究,例如数据的价值是如何产生的,政策和法规设想了怎样的数据旅程,以及数据类型对谁有价值(打算对谁有价值)。我们借鉴了两个经验案例:(a)就数字自我护理主题对医生进行的访谈;(b)利益相关者对临床试验中使用真实世界数据的期望,以及现有文献,提出了健康数据帮助我们做什么的类型学。该类型学旨在促进对数据使用所展现的不同角色和价值的思考。最后,我们将讨论监管如何才能更好地适应健康数据领域的价值评估实践,特别关注为欧盟层面的政策制定者确定监管挑战和机遇,以及 Covid-19 如何揭示每个案例的新方面。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

Value-creation in the health data domain: a typology of what health data help us do.

Value-creation in the health data domain: a typology of what health data help us do.

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 reflection 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.

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来源期刊
Biosocieties
Biosocieties SOCIAL SCIENCES, BIOMEDICAL-
CiteScore
3.40
自引率
6.20%
发文量
23
期刊介绍: BioSocieties is committed to the scholarly exploration of the crucial social, ethical and policy implications of developments in the life sciences and biomedicine. These developments are increasing our ability to control our own biology; enabling us to create novel life forms; changing our ideas of ‘normality’ and ‘abnormality’; transforming our understanding of personal identity, family relations, ancestry and ‘race’; altering our social and personal expectations and responsibilities; reshaping global economic opportunities and inequalities; creating new global security challenges; and generating new social, ethical, legal and regulatory dilemmas. To address these dilemmas requires us to break out from narrow disciplinary boundaries within the social sciences and humanities, and between these disciplines and the natural sciences, and to develop new ways of thinking about the relations between biology and sociality and between the life sciences and society. BioSocieties provides a crucial forum where the most rigorous social research and critical analysis of these issues can intersect with the work of leading scientists, social researchers, clinicians, regulators and other stakeholders. BioSocieties defines the key intellectual issues at the science-society interface, and offers pathways to the resolution of the critical local, national and global socio-political challenges that arise from scientific and biomedical advances. As the first journal of its kind, BioSocieties publishes scholarship across the social science disciplines, and represents a lively and balanced array of perspectives on controversial issues. In its inaugural year BioSocieties demonstrated the constructive potential of interdisciplinary dialogue and debate across the social and natural sciences. We are becoming the journal of choice not only for social scientists, but also for life scientists interested in the larger social, ethical and policy implications of their work. The journal is international in scope, spanning research and developments in all corners of the globe. BioSocieties is published quarterly, with occasional themed issues that highlight some of the critical questions and problematics of modern biotechnologies. Articles, response pieces, review essays, and self-standing editorial pieces by social and life scientists form a regular part of the journal.
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