ScanBalt declaration shows that the creation of a single EU Health Data Space is more urgent than ever
“Combating the second wave with digital means. Towards a common European Health Data Space”
European research clusters came together to exchange their digital solutions experiences during the first wave of COVID-19 infections. More than 30 examples from 15 European countries have shown that COVID-19 has served as an accelerator for digital health innovation. A large number of these initiatives are based on public research and utility institutions’ cooperation with private companies.
Jaanus Pikani, Chairman of ScanBalt: “Sharing is caring –we need much more exchange of patient-related data in Europe to combat the pandemic. The German Federal Ministry of Health has taken the right steps to this end during the German Council Presidency. The creation of a single EU Health Data Space is more urgent than ever.”
Five examples from different European countries illustrate innovations, good ideas, and solutions that can be found all over the continent:
- Sweden: The country has seen an acceleration of data generation in clinical environments. This is complemented by patient-generated data (via app’s) and machine-generated data (via sensors and wearables). The COVID-19 pandemic underlined the importance of sharing this data in real-time to support innovation. “Sharing of data doesn’t necessarily mean losing control. Sharing should be seen as human behavior, depending on the situation: We help each other.” ( Dr. Lars Lindskold (Portfolio Manager Swelife – a part of Sweden’s innovation agency)
- Italy: A project of the University of Milano Statale built up the possibility to share more easily biobank-data of COVID-19 patients. The idea is to generate a system of innovative services for existing biobanks to facilitate their coordination. “We have to obtain the critical mass of data needed to develop effective diagnostic and treatment approaches and to provide the necessary support for research and innovation activities with respect to COVID19 and possible future viral outbreaks.” Fiorenza Lipparini (Strategic Adviser to LendLease, Milan Innovation District Life Sciences Ecosystem, Italy)
- Portugal: “TraceCovid” is an e-Health system, promoting telehealth, patient’s security, and the relief of pressure from health facilities. It is used nationally, provides a full-cycle response to surveillance programs for suspected and confirmed cases of COVID-19.” For health professionals, it allows to telemonitor patients, centralize their relevant data in near real-time, while contributing to informed decisions. It promotes the integration with important national e-Health systems, as with the National Epidemiologic Surveillance System, with contacts made through the National Health Contact Centre and with the Citizen Portal. Joana Feijó (Business Development Director, Health Cluster Portugal)
- Germany: The telematics system “Virtual Hospital” makes it possible to provide the intensive care expertise of the university hospitals Aachen Essen and Münster to other hospitals. This ensures high-quality care for seriously ill patients close to their homes. “The total bed capacity for intensive care medicine in the state of NRW will thus be better used, and will now make it possible to admit patients from the neighboring countries of Belgium and Holland who have already reached the limits of their capacity.” Joseph Hilbert (Honorary Professor at the Faculty of Medicine at the Ruhr-University of Bochum, Germany)
- Estonia: “The National Health Information System (NHIS) which stores most of the clinical documentation, allowed quick re-engineering of reporting of real-time data about the COVID-19 situation, including all of the COVID-19 laboratory test results, information about patients treated in primary health care and in hospitals as well as the number of people recovered or deceased.” Estonian residents could access their test results (incl. COVID-19) on a national patient portal immediately after they were sent to NHIS, also patients were able to ask for sick leave directly on the patient portal taking an unnecessary administrative burden off the healthcare system. Already seasoned services such as e-prescriptions, doctor-doctor e-consultation, and e-referral systems provided the opportunity to minimize the need for physical contacts in the healthcare settings, increasing extra safety and optimizing resource use for both clinicians and patients. Peeter Ross (Professor in eHealth and head of eMedLab in Tallinn University of Technology)
The essential finding of this pan-European conference is; that these joint projects now need a framework that combines their flexibility with the necessary legal certainty, therefore making them replicable and scalable throughout Europe.
Jaanus Pikani, Chairman of ScanBalt:
“In the innovative centers of science and research, the European Data Space has long been a reality. Now it is time to create a uniform legal framework that clearly regulates the handling of patient and research data for all parties involved: Public health, academic research, private research companies, start-ups, and so on. A free European Data Space will only work if all citizens have access to their complete electronic health record and remain in control of it in accordance with the EU basic data protection regulation.”
ScanBalt is an innovation network that brings together academic and industrial research, university hospitals and non-university research institutions, study centers, and highly specialized suppliers in the pharmaceutical, biotechnology, and medical technology sectors from different European countries and regions. Against the background of the first COVID-19 wave, these science and research regions have taken an inventory of the digitization of European health systems and formulated a “Joint Declaration” about the necessary next steps towards a common European Health Data Space. It describes deficits in the European Data Space and proposes concrete solutions. The declaration calls on the European Union to finally create a reliable legal framework for the cross-border exchange of health data. This is the only way for a pan-European solution to the current pandemic. (https://scanbalt.org/eu-health-data-space/support-the-declaration/)
