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以患者为中心的数字健康转型的系统模型与要求

A System Model and Requirements for Transformation to Human-Centric Digital Health.

作者信息

Ruotsalainen Pekka, Blobel Bernd

机构信息

Faculty of Information Technology and Communication Sciences (ICT), Tampere University, Tampere, Finland.

Medical Faculty, University of Regensburg, Regensburg, Germany.

出版信息

J Med Internet Res. 2025 Apr 28;27:e68661. doi: 10.2196/68661.

Abstract

Digital transformation is widely understood as a process where technology is used to modify an organization's products and services and to create new ones. It is rapidly advancing in all sectors of society. Researchers have shown that it is a multidimensional process determined by human decisions based on ideologies, ideas, beliefs, goals, and the ways in which technology is used. In health care and health, the end result of digital transformation is digital health. In this study, a detailed literature review covering 560 research articles published in major journals was performed, followed by an analysis of ideas, beliefs, and goals guiding digital transformation and their possible consequences for privacy, human rights, dignity, and autonomy in health care and health. Results of literature analyses demonstrated that from the point of view of privacy, dignity, and human rights, the current laws, regulations, and system architectures have major weaknesses. One possible model of digital health is based on the dominant ideas and goals of the business world related to the digital economy and neoliberalism, including privatization of health care services, monetization and commodification of health data, and personal responsibility for health. These ideas represent meaningful risks to human rights, privacy, dignity, and autonomy. In this paper, we present an alternative solution for digital health called human-centric digital health (HCDH). Using system thinking and system modeling methods, we developed a system model for HCDH. It uses 5 views (ideas, health data, principles, regulation, and organizational and technical innovations) to align with human rights and values and support dignity, privacy, and autonomy. To make HCDH future proof, extensions to human rights, the adoption of the principle of restricted informational ownership of health data, and the development of new duties, responsibilities, and laws are needed. Finally, we developed a system-oriented, architecture-centric, ontology-based, and policy-driven approach to represent and manage HCDH ecosystems.

摘要

数字转型被广泛理解为一个利用技术来改变组织的产品和服务并创造新的产品和服务的过程。它正在社会的各个领域迅速发展。研究人员表明,这是一个多维过程,由基于意识形态、思想、信念、目标以及技术使用方式的人类决策所决定。在医疗保健和健康领域,数字转型的最终结果是数字健康。在本研究中,我们对主要期刊上发表的560篇研究文章进行了详细的文献综述,随后分析了指导数字转型的思想、信念和目标及其对医疗保健和健康领域的隐私、人权、尊严和自主权可能产生的影响。文献分析结果表明,从隐私、尊严和人权的角度来看,当前的法律法规和系统架构存在重大缺陷。数字健康的一种可能模式基于与数字经济和新自由主义相关的商业世界的主导思想和目标,包括医疗保健服务的私有化、健康数据的货币化和商品化以及个人对健康的责任。这些思想对人权、隐私、尊严和自主权构成了重大风险。在本文中,我们提出了一种名为以人为主的数字健康(HCDH)的数字健康替代解决方案。我们使用系统思维和系统建模方法,为HCDH开发了一个系统模型。它使用5个视角(思想、健康数据、原则、监管以及组织和技术创新)来与人权和价值观保持一致,并支持尊严、隐私和自主权。为了使HCDH具有未来适应性,需要扩展人权、采用健康数据有限信息所有权原则以及制定新的义务、责任和法律。最后,我们开发了一种面向系统、以架构为中心、基于本体且由政策驱动的方法来表示和管理HCDH生态系统。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/139f/12070013/1b4623095c6a/jmir_v27i1e68661_fig1.jpg

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