The European Parliament believes that interoperability, confidentiality and ethics must be given a high priority in the future European Health Data Space. MEPs upheld this message in a non-legislative resolution that was adopted in Strasbourg on Wednesday, 18 December, and in an exchange of views with Stella Kyriakides, the new Commissioner for Health and Food Safety, the previous day.
Finding the right balance
The non-legislative resolution was submitted by the Parliament Committee on Health to enable the digital transformation of health and care services in the digital single market and to empower citizens to act and build a healthier society.
The text highlights the enormous potential of digital health as well as the plethora of privacy, security and safety challenges. “It is a matter of finding the right balance”, said Véronique Trillet-Lenoir (Renew Europe, France). She went on to itemise what is required: a balance between anonymisation and data-sharing, between protection and the need for researchers to have access to big data, between decision-making algorithms and human support, and so on.
The resolution aims to strike this balance. On the one hand, the resolution encourages the exchange of information “with regard to patient records, electronic prescriptions, laboratory test results, medical imaging and discharge documentation”, believing that current progress is too limited. On the other hand, Parliament insists on the notion of consent that lies at the heart of the General Data Protection Regulation (GDPR - Regulation 2016/679). The MEPs are also strongly emphasising the importance of anonymisation and pseudonymisation.
In concrete terms, the text calls on the Commission and the Member States to put in place a clear timetable for the developments planned for establishing digital health Europe, complete with mid-term evaluations and targets to be met.
An initiative before the end of 2020
The previous day, the European Commission was questioned about its long-term vision by MEPs. In response to a written question, Stella Kyriakides confirmed that she intends to create a European Health Data Space to promote the exchange of health data and to support research on new prevention strategies, treatments, medicines, medical devices and outcomes. She suggested that, before the end of 2020, the European Commission would present its data strategy, which will include the issue of health data. “We are at the beginning of the journey”, she said, adding that she would act to build a system based on trust which will exclude no one, will offer appropriate training and will protect data. (Original version in French by Sophie Petitjean)