AVATAR - Project: Anonymisation of personal health data through the creation of digital avatars

Abstract

This paper presents a novel approach to data anonymization aimed at enhancing patient care and fostering innovation through the AVATAR project. The key objective is to shift the paradigm from data ownership to data utilization, positing that the true value of data lies in its application rather than its possession. By treating health data as a common good accessible to all sectors of society, we propose the creation of digital avatars derived from a decentralized data pool, which preserves anonymity while leveraging real-world data. This innovative framework opens new avenues for practical applications of existing health data without compromising data protection standards. Furthermore, we advocate for an adaptive consent process tailored to specific utilization requests, facilitating the use of routine care data in research and development. An extensive telephone survey conducted as part of this study revealed that a significant majority of respondents expressed willingness to donate their health data under conditions of narrow consent, high control over their information, and granularity, particularly for medical research purposes. This research underscores the potential for responsible data utilization to drive advancements in healthcare while respecting individual privacy rights.