BD.20.009 – Towards a personalized e-health data space. Responsible data sharing for preventive and curative health care innovation

Route: Creating Value through responsible access to and use of big data

Cluster question: 105 How can Big Data and technological innovation (e-health) contribute to health care?

Digital innovations, applied within and outside healthcare organisations, generate Big Data which can feed AI solutions in disease prevention and early detection. For example, biosensors integrated into watches may provide early warning and prevent heart attacks and enable real-time heart monitoring after attacks. Partial solutions exist and, in small settings, some success has been achieved but, as individuals generate vast amounts of data across many different activities, scaling up poses significant challenges.
Advances in infrastructure, architecture, standards and protocols now allow for federated ‘data spaces’ that enable responsible access to and connection between data from many different sources. Data spaces are more suited to sensitive health data than traditional databases or centralized data lakes are, as they allow individuals to maintain sovereignty and control over their own data, while providing controlled access to specific actors for agreed-upon purposes. Nevertheless, the implementation of a personalized e-health data space also entails significant organizational and behavioural challenges.
This project tackles fundamental research, technology design and implementation, and strategic organizational changes, leading to a breakthrough. Fundamental research questions relate to the development, implementation and integration of data spaces into existing healthcare systems and processes, whereby we take an interdisciplinary approach combining technical, medical, organizational and behavioural disciplines. Technology design and implementation relates to putting new European data space developments into practice together with consortium partners both across and beyond the value chain of healthcare organizations. Strategic organizational changes relate to the orchestration of a system-wide shift in culture, practices and value towards a paradigm shift where healthcare is no longer viewed as a ‘solution shop’ but rather a facilitated network of data-enabled personal health maintenance.

Keywords

Artificial Intelligence, Big Data, consent management, e-health, lifestyle as medicine, personalised health data, responsible data sharing

Other organisations

TNO

Submitter

Organisation University of Groningen (RUG)
Name Prof. dr. A. (Albert) Boonstra
E-mail albert.boonstra@rug.nl
Website https://www.rug.nl/staff/albert.boonstra/