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Tero Silvola

CEO
BC Platforms

 

A set of three laws concerning the secondary use of healthcare data is making its way through the Finnish Parliament. Surprisingly, it is not clear that Parliament will ask industry leaders for their views on the proposed laws, which could jeopardize Finland’s goal of becoming the world’s leading research ecosystem.

Amcham Finland member BC Platforms has more than 20 years of global experience working with leading companies and institutions, as well as governments, at the crossroads of healthcare, research, and pharmaceuticals developing the platforms by which data is made available and can be used. All of BC Platforms’ R&D work—software coding, development, and more—takes place in Finland, though 60% of the company’s technology goes to the USA.

All this is done in the service of precision medicine, which runs on data.

For example, one can establish an at-risk group based on a genetic disposition for coronary heart diseases. The emphasis then moves from reactive to preventive medicine, which not only saves lives, but also untold amounts of suffering and money. Precision medicine is about getting the right drug at the right time to the right patient at the correct dosage. Data makes this possible.

More so than governmental agencies, BC Platforms has visibility into what is happening globally with health data. It is crucial that their, and other companies’, perspectives are heard before the laws are enacted.

We talked with Tero Silvola, CEO of BC Platforms, to discuss what should take place in order for the Finnish life science ecosystem to thrive and precision medicine to take hold in the country.

Silvola sees three potential issues with the laws being considered by Parliament at the moment.

First, there is a risk that the laws would do away with patient consent for the use of data for research purposes.

“If the patient is educated on what consent means and voluntarily wants his or her data to be used for research, that should be respected,” says Silvola. The mood of the laws indicates that the government thinks it might know how to use patient data better than patients themselves.

“Finland is not the only country with a dream of data-driven healthcare or value-based healthcare, where quality matters” says Silvola. Countries are naturally competing for this massive new industry, but the Finnish laws may make access to data so complicated and slow that it is no longer competitive and our citizens would not get the best practice personalized care, which is Silvola’s second point.

Third, a process of “mystification,” which goes contrary to the facts, data, and the professional opinions of researchers and healthcare workers, is taking place around the use of health data—genomic data, especially. The data is in Finland and its use strictly regulated, but nevertheless is sometimes framed in terms of national security. This causes undue hindrance to research, related funding will go elsewhere instead, and finally, it creates a misconception in the public based on fear. Finland, among all other countries, does need to understand its national genome structure, and it is an ethically right approach to make that available for personalized care, as well as industry-related commercial research.

Not all innovation can be done alone, however.

“COVID has taught us that diseases do not respect national borders,” says Silvola. International data sharing is needed to fight some diseases, and applicable data should follow this factual reality as well as the EU right to movement. “If I move to another country in the EU, I expect my health data to follow me,” adds Silvola. The use of data must be de-mystified to allow such seamless movement, according to Silvola.

Finland should follow the best practices of other precision medicine programs in building an ecosystem in which healthcare providers, researchers, pharmaceutical companies, and willing citizens join together to create the best medicine possible. This will be done by harnessing the amazing powers hidden within the streams of available data. The proposed laws would hinder this process.

First, however, the Finnish government must listen to those working on the ground to gain a broader visibility into what implications its laws might have.