'New legislation needed to increase Europe’s data flow'
It has been claimed that data is the new health currency, but too many are missing out on the new health gold because data still cannot be shared across Europe.
WHY IT MATTERS
A healthy flow of data in Europe is vital to improve the outcomes and sustainability of health systems. Until it is possible to move the data out of the siloes, and into the trenches, data will be unable to fulfil its life-saving potential.
The Opening Keynote session called Information Saves Lives: Enabling a Healthy Flow of Data in Europe discussed different ways to enable data movement, while balancing the need to protect privacy. The speakers were Jyrki Katainen, Former European Commission vice president for jobs, growth, investment and competitiveness, president of Sitra, Finland and Dr Mark Davies, chief medical officer (EMEA), IBM and IBM Watson Health, UK. The panel was moderated by Claudia Pagliari, director of Global eHealth Programme, University of Edinburgh, UK.
ON THE RECORD
Katainen said Sitra was chosen to coordinate joint action to improve the flow of European data: “The joint action aims to find the European solution. It might end up with changing legislation.”
Katainen also said it was important to build effective frameworks and establish trust in institutions to share data. He believes “trust is crucial” when it comes to sharing data with governments: “Being pragmatic; if you manage to get Europe-wide trustworthy principles and standards, which must be applied by all Member States, then the standards must be as strict and transparent as the best performing countries.
"I can imagine it would increase trust in those countries where trust towards governments is not as good as in some other countries. Before we do that, we need more extensive public debate on the matter and define what those standards mean…I believe this is the way Europe can create long-term sustainable competitiveness for data use.”
He said it was possible to build trust by putting legislation and parameters in place, provided the process was extremely transparent and personal data was not used. He added that there was a high-level of trust in Finland, with about 70% of Finns considering the authorities trustworthy.
Dr Davies said there should be a wholesale shift to population health management based on a “deep understanding of population” to improve clinical delivery of care. He believes it is important to have a much more inclusive view of the data, which will drive insights, including information such as, behaviours, social care and genomics.
He would prefer the data architecture to be centred around the citizen, not the disease, which would “create a shift in the centre of gravity”. Moreover, he believes it is about giving individual citizens control, as everyone is not the same, which is why “individual control is so important”.
Davies said learning healthcare systems should be created and this would reduce problems like, unexplained variation, waste and duplication. He said they should learn from the aeronautic and petrochemical industries and embed systematic learning. Healthcare is a knowledge industry and that research, collaboration and data sharing is an integral part of clinical practice.
He added that, “No single government is going to crack this on its own. We have to create ecosystems of collaboration where people will be able to come together to share expertise and share insights”.