The working paper “Towards Trustworthy Data Ecosystems” from the Finnish Innovation Fund Sitra provides guidelines for the future strategic use of sensitive data within European health systems. It addresses ethical, legal and self-regulatory frameworks for balanced data ecosystems, discusses the current challenges and establishes a set of recommendations for a new health and well-being data paradigm.
The working paper at a glance:
- The 42-pages document highlights the role of data in health systems, data-related challenges and recommendation for person-generated data;
- It has been based on the assumptions of “A European strategy for data” that aims at creating a single market for data that will ensure Europe’s global competitiveness and data sovereignty;
- “Enabling the reuse of data is crucial for research, development and innovations, but returning data back to individuals and creating more relevant services for them is equally important to keep the data flowing. To make data reusable, it should be made FAIR,” claims Jaana Sinipuro, Project Director IHAN – Human-Driven Data Economy (Sitra) in the introduction;
- The goal of the working paper is to lay solid foundations for future healthcare in which more data is generated by every individual outside of the healthcare system;
- The leading principle of transparent data use should be based on the “four Ws”: who wants to know what, from whom, and for what reason;
- To enhance the development of robust health systems in the data-based economy, Europe needs to adjust the legal framework to tackle current data-related challenges, develop shared ethical guidelines and codes of conduct, and advocate stakeholders’ self-regulation;
- The working paper was compiled by Sitra in collaboration with: Bogi Eliasen, Director of Health at the Copenhagen Institute for Futures Studies CIFS (Denmark); Thomas Plochg, Director of the Netherlands Federation for Health (Netherlands); Eric Pol, Chairman of the aNewGovernance (Belgium); Stephan Schug, Chief Medical Officer at the European Health Telematics Association EHTEL (Germany); Robert Schuschnig-Fowler, Expert Support Engineer at SAP (Germany). The editor: Artur Olesch, Digital Health Journalist.
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