Simagine in a country the medical data of all citizens – their prescriptions, treatment reports, blood counts, X-rays – were stored in a central database. Imagine further that this data could be retrieved in pseudonymised form by companies in order to use it for research and to improve their own products. And now imagine if you could opt out of this sharing, but out of 5.5 million citizens, only 217 people would have done so.
This is the situation in Finland. What might sound like a dystopia in Germany, where most doctors cannot even be reached by e-mail due to concerns about data protection, is reality in the Nordic country. The database is called Kanta (Finnish for “tribe”) and all doctors, pharmacies and hospitals licensed in the national healthcare system are legally obliged to use it. Every citizen can log into the database on the Internet and look through their own findings and order recurring prescriptions. If a patient goes to a new doctor, the doctor can, with their consent, access the patient’s entire medical history and base diagnosis and therapy on it.
“Focus on prevention and health promotion”
In addition, citizens who use a fitness tracker can also upload their data to the database. In the future, Kanta will also collect data on social benefits that a citizen has received. In Finland’s much more extensive state social system, it is hoped that the exchange of data between different authorities and providers will lead to more efficient processes, for example because a citizen does not have to answer the same questions for every contact person.
In Finland people are proud of the system, in order to show it off the Finnish state financed a press trip to which an editor of the FAZ was invited. “The Finnish healthcare system focuses on prevention and health promotion,” says Päivi Sillanaukee, Ambassador for Health and Wellbeing at the Finnish Ministry of Foreign Affairs. What initially sounds like a matter of course contains important information: In Finland, the focus is on intervening before a patient becomes ill. To do this, the data is collected and brought together in a central database. The approach differs from the German one, as there is a pronounced allergy to centralized databases in this country, especially when it comes to sensitive information such as health data.
For example, the main point of criticism against the Luca app for contact tracing during the corona pandemic was that it stored the data in a centralized manner. The state Corona warning app, on the other hand, relied on a decentralized system in which the data was only stored on the individual cell phones. In Finland, on the other hand, “there can be no personalized care if there is no cohort data collection,” says Sillanaukee. People in Helsinki are aware that such comprehensive data collection is sometimes viewed critically. “Citizen trust is critical to developing data-driven innovation in healthcare,” says Sillanaukee.
She points out that the system offers strict protection against anyone accessing data who is not authorized to do so – and that all data collection is compatible with the European General Data Protection Regulation. This also applies to the further use of the data for research purposes mentioned at the beginning. Pharmaceutical companies can submit a research project to the data trust authority Findata and receive pseudonymised patient data sets. According to the Finnish “Act on Secondary Use of Health Data” of 2019, in principle all stored data can be accessed for approved research projects, unless the patient has lodged an objection (“opt-out”) with the authority. However, with 217 objections from the total of 5.5 million Finns, the objection rate is only 0.004 percent.
The authority has received 741 corresponding data requests since the law came into force. These are carefully checked, sometimes for a year. A research project by the Japanese pharmaceutical company Takeda is currently using Findata data to investigate whether a mathematical model that depicts the development of lung cancer works. If the data underpin the validity of the model, future lung cancer studies could do with fewer subjects, the researchers write.
Based on its own experience, Finland also promotes the collection of health data at EU level as well as their secondary use for research purposes. 26 European countries are currently working in the “Tehdas” project on the principles for a European data room for health data, the project coordination lies with Finland. The project is part of the third health program of the European Commission. The goal is a seamless exchange of health data across Europe to improve personalized therapies and advance research. Project manager in Helsinki is Markus Kalliola. Data protection is also an issue for him. “People in Finland are quite critical, they want their data to be protected,” he says. “But they trust the authorities to take good care of it.”