“If the state is sincere, people will also share their data.”

In the panel “Unlocking the Power of Patient Data”, four representatives reported on success stories of their systems - but also on mistakes that were made. In particular, when it came to stakeholder management - i.e. taking into account the interests of patients and healthcare professionals - some had to readjust.

When the COVID-19 pandemic hit Europe five years ago, Denmark had a decisive advantage: all relevant patient data could be recorded and evaluated on a daily basis. “At seven o'clock in the morning, we received all the data from the hospitals,” reports Vibeke van der Sprong, Deputy Director General of the Danish Health Data Authority. “We had an overview of how the pandemic was developing in our country. We knew how many people had been tested the day before, how many were being treated in hospitals and how many were in intensive care. At two o'clock in the afternoon, we sent everything to parliament. The communication channels and data flow were actually already in place before the pandemic.”

Finland's honey pot for Europe's researchers:

Denmark and its northern neighbors Sweden, Norway and Finland set out many years ago to digitize their healthcare systems, collect patient data and make it available for research. “We have 100% coverage of patient data – and also social data in the same system,” says Jukka Lähesmaa from the Finnish Ministry of Social Affairs and Health. “Anyone in the healthcare system can access this data. You can submit an application for research and innovation and get access to all national data registers, and by the way, so can researchers from abroad. For me, coming from a research background myself, it's like a honeypot.”

Norway uses its national health data registers for large population studies and also for strategic direction, as Jacob Holter Grundt from the Norwegian Directorate of Health reports. The data is used for benchmarking, quality control and deciding on priorities. For patients, on the other hand, the most important thing has been the introduction of electronic prescriptions and electronic patient files, in which, for example, allergies, medication plans and critical diagnoses are stored and can be accessed by everyone in the healthcare system.

Patient participation

However, mistakes have also been made along the way to digitalization, Grundt admitted. In the beginning, patients were not well taken care of in some areas of stakeholder management. Now there is an opt-out option for databases and patients can use an app to see what is happening with their data. However, 95 percent of Norwegians do not worry about this.

“It's about the attitude with which you look at and handle this data,” agreed Maria Hassel from the Swedish e-health agency. In Sweden, patients retain control over their data and can decide at any time who should and should not be able to view it. An authority monitors data protection and coordinates with stakeholders, according to Hassel. “If the state is open and honest, people will share their data.”