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患者主导的创新与全球健康公正:1 型糖尿病护理的开源数字健康技术。

Patient-led innovation and global health justice: Open-source digital health technology for type 1 diabetes care.

机构信息

Institute for Ethics and History of Health in Society, University of Augsburg, Augsburg, Germany.

Institute of Ethics, History and Theory of Medicine, Ludwig-Maximilians-University, Munich, Germany.

出版信息

Bioethics. 2024 Jul;38(6):511-528. doi: 10.1111/bioe.13205. Epub 2023 Oct 13.

Abstract

Health innovation is mainly envisioned in direct connection to medical research institutions or pharmaceutical and technology companies. Yet, these types of innovation often do not meet the needs and expectations of individuals affected by health conditions. With the emergence of digital health technologies and social media, we can observe a shift, which involves people living with illness modifying and improving medical and health devices outside of the formal research and development sector, figuring both as users and innovators. This patient-led innovation has been celebrated in innovation studies and economics as a "bottom-up" type of innovation. In this article, we take a closer look at open-source patient-led innovation in the context of type 1 diabetes care. In our inquiry, we pay particular attention to the social and ethical dimensions of this innovation, building on empirical material. Upon exploring the notion of patient-led innovation and its socio-political context through the lens of intersectional and global health justice, we argue that a proactive strategy is needed to ensure that open-source patient-led innovation will be more globally accessible, center the health needs of the most underserved populations, as well as facilitate equitable and just health benefits. To support this aim, we provide a range of examples of different initiatives addressing the persistent inequalities that have so far inhibited patient-led innovation from more fully materializing its innovative potential.

摘要

健康创新主要与医学研究机构、制药和技术公司直接相关。然而,这些类型的创新往往不能满足受健康状况影响的个人的需求和期望。随着数字健康技术和社交媒体的出现,我们可以看到一种转变,即患有疾病的人在正式的研发部门之外修改和改进医疗和保健设备,既是使用者也是创新者。这种由患者主导的创新在创新研究和经济学中被称为“自下而上”的创新。在本文中,我们将更详细地研究 1 型糖尿病护理背景下的开源患者主导的创新。在我们的调查中,我们特别关注这一创新的社会和伦理维度,并以此为基础进行实证研究。通过交叉和全球健康正义的视角来探讨患者主导创新及其社会政治背景,我们认为需要采取积极主动的策略来确保开源患者主导的创新在全球范围内更容易获得,关注服务不足人群的健康需求,并促进公平公正的健康效益。为了支持这一目标,我们提供了一系列不同倡议的例子,这些倡议旨在解决迄今为止一直阻碍患者主导的创新更充分地发挥其创新潜力的持续不平等问题。

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