Ethics

Protecting people while using their health data for research, a framework for understanding relative responsibilities and roles

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Introduction & why this paper was written A publication in Frontiers in Big Data was posted on 16 September, 2022: “A concentric circles view of health data relations facilitates understanding of sociotechnical challenges for learning health systems and the role of federated data networks”. The authors set out a model of data systems that they … Read more

EHDEN Ethical Advisory Board (EAB), and colleagues, publish new conceptual, socio-technical framework supporting research via federated data networks: Concentric Circles View

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5th October 2022, Brussels, Belgium: Working with real word data is not just about the data itself, nor only technical, methodological, or platform aspects, but also governance, ethical and legal compliance. Ensuring citizen or patient protection, privacy and meeting legal requirements are critical elements, requiring trust, trustworthiness and reliance on appropriate systems and appropriate involvement … Read more