Consumer health technology data in the German healthcare system: Stakeholder perspectives, ethical challenges, and governance pathways

德国医疗保健系统中的消费者健康技术数据:利益相关者的视角、伦理挑战和治理路径

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Abstract

OBJECTIVES: The paper explores how data generated by consumer health technologies can be used responsibly for research in the German healthcare system. It aims to identify perceived benefits, obstacles, and ethical concerns from different stakeholder groups and to interpret these perspectives through the framework of data solidarity. METHODS: The study employed an explorative qualitative design: data were collected in cross-sector group discussions, semistructured follow-up interviews, or written responses to the interview guide. Stakeholders included healthcare professionals, statutory health insurance representatives, medical researchers, digital health developers, and experts on data governance and ethics. RESULTS: Stakeholders highlighted several potential benefits of consumer health technology data use, such as patient empowerment, preventive care, advantages for research, and more personalized treatment pathways. At the same time, they pointed to obstacles including lack of interoperability, data quality concerns, and limited trust in commercial actors. Ethical assessments varied depending on the context and purpose of use. CONCLUSION: The societal value of consumer health technology data depends on the governance conditions under which it is used. Independent infrastructures, reliable standards for data validity, and practices of solidarity are crucial for realizing benefits while addressing risks. Broader stakeholder involvement and more systematic evaluation will be necessary to strengthen future governance approaches. Besides this, we argue that ethical and societal concerns should not be treated as external constraints of innovation, but as constitutive dimensions of equitable and trustworthy digital health systems.

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