In Finland, the health data collected in national registries already serves fairly well the needs of clinical care and academic fundamental research, and statistical purposes. However, the use of such data in company-driven research remains limited, even though applied research is essential for creating innovations, such as developing new treatment methods, drugs and well-being products. The PreMed project launched by VTT introduces a corporate perspective to the planning of a national service operator to coordinate the use of health data.
The new national law on secondary use of health and social services data aims to make the exploitation of health data more flexible than before and to increase the exploitation of unidentified data for additional purposes than only the treatment of patients. The service operator to be established with the new legislation shall be tasked with ensuring that information security is complied with in the exploitation of health data. The PreMed project provides assistance for establishing the service operator and introduces the perspective and needs of applied research to the development work.
"If it was easier to use the health data of Finnish people, the citizens could get even better treatment and support for promoting their own health. The health data could be used for such purposes as developing functional foods and drugs. Easier access to data would also enhance the quality and efficiency of healthcare by means of, for example, artificial intelligence based applications. Naturally, when using data, it is important to ensure the privacy and confidentiality of the data on citizens," says Jaakko Lähteenmäki, Principal Scientist at VTT.
Finnish companies fear that research will flee abroad
The PreMed project was launched in spring 2017. It is currently being funded by VTT, Business Finland and the companies that joined the project in November 2018*. Phase 1 of the project included an interview study with 38 companies and organisations within the sector.
"Pharmaceutical companies, and organisations providing research services to them, already exploit health data extensively. However, based on the results of the interview study, many other sectors, such as food industry and software companies, are also interested in using the health data citizens and the research results based on it in a larger extent than before", Lähteenmäki points out.
Enterprises find it particularly challenging that the health data is currently scattered and maintained by various data controllers in different silos. Under the current circumstances, the doom scenario is that the research based on registered data and the development of artificial intelligence solutions will flee from Finland to countries where such data is more easily accessible.
"Today, the acquisition of operating licences requires filing-in separate applications to many stakeholders, which is not only expensive but highly time-consuming as well. However, the law defining secondary use of health and social services data and the national service operator based on the law are considered a very significant opportunity. We definitely want to be involved in this preparation process," Lähteenmäki says.
The Phase 2 of the PreMed project that began in November 2018 will include a registry and biobank study utilising various data sources. It will examine, for example, the use of genome data in the implementation of individual drug therapy. The PreMed project will continue until June 2020.
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