In a recent survey by the Finnish Innovation Fund Sitra, four out of ten Europeans said that a lack of trust towards service providers was preventing them from using some digital services. At the same time, nearly seven out ten European said it should be possible to identify digital services that use data in a fair way.
Surveys like these are among the reasons why a number of stakeholders across Europe are trying to establish rules, concepts, and technological tools to implement patient consent and permit-based data sharing in large-scale research networks. One of these networks is FinData. It brings together genome data and clinical data of one tenth of the Finnish population.
Sitra is closely involved with this project, but there are other projects, too. At the HIMSS & Health 2.0 European conference, Nigel Hughes, scientific director of Janssen Clinical Innovation, gave a brief outline of the European EHDEN project, one of the vastest efforts worldwide to create a decentralised real-world data research infrastructure for therapeutic research. All these networks require a high level of trust on the side of citizens, and they need tools and rules that make sure sensitive data can be used but not misused.
Within its IHAN project – named in analogy to the international banking account number IBAN – Sitra is currently trying to build the framework for a fair and functioning post GDPR data economy first in Finland and then in Europe:
“We are testing and creating common concepts of data sharing in order to set up guidelines for a human-driven use of data – ideally at the European level”, said Jaana Sinipuro, project director at Sitra.
With the GDPR, according to Sinipuro, there was legal framework in place now that could act as a starting point – especially with its data portability act, that specifies the right to get personal data in a transferable form. “But there is still much to do in making the GDPR work and focus less on sanctions but more on the potentials for the European data economy.”
Sinipuro suggested that building consent- and trust-based services should become part of the ‘European project’ in the digital era:
‘We are not making deals, but we are trying to find consensus, and I would want to invite everybody to join us. We need to redefine the rules for data ownership and draft something like a digital constitution for European citizen across all industries.”