The European Research Council (ERC) has granted Professor Klaus Hoeyer and his team a 2.5-million-euro grant. These funds will be used to focus on the implications of sharing sensitive health data across borders and how individuals and health professionals view and experience such increased exchanges. How will new ways of exchanging and using data affect health care systems?
“This five-year ERC grant is great news for our research. In our previous ERC project, we specifically looked at the factors driving the integration of health data infrastructures and how it was affecting the healthcare system at a national level. The new ERC grant will enable us to work on a transnational level,” says Hoeyer. He is a principal investigator for reNEW’s PREPARE theme at reNEW’s Copenhagen node.
There are many private initiatives underway, but there are also massive public investments. This is particularly true at EU’s level. “Not many people know it, but there is a process underway to create common data standards for electronic medical records across the EU, so that all data from all countries can be reused by anyone requesting access through the so-called European Health Data Space (EHDS),” Hoeyer adds.
Their research will explore the driving forces behind this development as well as the implications for health care systems, health professionals, and citizens. “We want to understand how citizens and health professionals experience the new complex ways in which data is exchanged, how individuals experience or view such increased exchanges of electronic medical records as well as research data,” Hoeyer explains. “Will cross-border data sharing of their health data for example impact their trust in the health care system and alter the relationships between patients, doctors, and scientists? If we don’t understand how data sharing affects these relationships, we run the risk that much of what we are working toward will not be possible.”
The inter-disciplinary aspect of this research project shows the value of having people with a diverse background working at medical faculties. “Our research (at the University of Copenhagen’s Faculty of Health and Medical Sciences) is enhanced by interactions and collaborations with epidemiologists, biostatisticians, laboratory scientists, and clinicians,” Hoeyer notes.
Understanding citizen views is important also for frontier science: “We hope that we can create a better understanding of citizens’ hopes and concerns in relation to data sharing and how they relate to the practical challenges researchers face,” he explains.
With this grant, Hoeyer hopes to contribute to PREPARE’s efforts to understand the social impact of data-intensification, and to create more socially robust ways to implement frontier medicine.