Europe's Mission to Balance Health Data and Ethics

The European strategy for data envisions the European Union's way of becoming a role model as a data empowered-society, but it also specifies a legislative framework to be introduced by 2030. One of the core components is the European Health Data Space (EHDS), which will enable the reusing of data to strengthen innovation and research, support evidence-based decisions and improve the quality of care.

Digital Dividends for Citizens

"EDHS is key to sharing data and applied knowledge among the member states, to avoid duplication, and to utilize the volume of data in order to develop valuable insights. Our ultimate goal should be to use the data to improve health outcomes and decrease health inequalities among the over 700 million people living in Europe," said Mahmood Adil, Medical Director at Public Health Scotland. In population health management, data and relevant digital services can be applied to initiate behavioral change, identify risk groups, and provide tailor-made advice and interventions to save citizen's lives.

However, health data has the potential to generate added value only if they are well protected. "There should be no compromise on privacy. In the health sector, trust is a must," claims Jyrki Katainen, President of the Finish Innovation Fund Sitra. In his opinion, we strive for a world where we can influence not only how and when we use services, but also how our health data is used.

"The utilization of data and personalized services tailored around people's life circumstances are critical to a sustainable healthcare service system for the future. Well-being does not just mean treating illnesses; it is about empowered individuals and tailored services for individual needs," emphasized Katainen.

Watch the senior medical officer at the Regional State Administrative Agencies in Finland speak with HIMSS TV about how Finnish citizens can utilize their health data.

Cross-Border Data Flow for Research and Public Health

Precision information is an essential component of effective evidence-based policies and accurate responses to global health threats, like COVID-19. "Data helps policymakers in identifying vulnerable communities, redistributing resources among care facilities. We also saw how telecom data was used to identify mobility trends and the emergence of hot spots in community transmission of the coronavirus," said Mariam Shokralla, a digital health consultant.

COVID-19 urges us to find new data-sharing models for people-generated health data on various digital platforms while respecting privacy and ethical use considerations.

Linking Scattered Patient Registries

A pioneer pan-European online knowledge-sharing platform is the European Platform on Rare Disease Registration (EU RD Platform). It aims to cope with the enormous fragmentation of data from rare disease (RD) patients contained in hundreds of registries across Europe. The platform makes RD registry data searchable and findable, thus increasing the visibility of each registry, maximizing the value of the information each contains, and enabling extended use and reuse of the data.

"The registries are fundamental tools for research purposes and are particularly important in the field of rare diseases where the data are fragmented. They become even more relevant in following cohorts of patients, and thus the natural course of diseases, as well as for the possibility of finding diagnoses and treatments," said Ioana Maria Gligor, Head of Unit covering European Reference Networks and Digital Health at DG SANTE, European Commission.