Harnessing billions of terabytes of data could radically transform European health care and save thousands of lives.
Getting to it is the tricky part.
The data is scattered across systems that can’t always talk to one another. Many patients fear for their privacy. Some of the Continent’s large national health care systems resist changing their ways.
And the EU is largely powerless to push for change. It’s using the reality of the bloc’s health care to preach the promise of big data.
Baby boomer Vytenis Andriukaitis, the EU commissioner for health and food safety, thinks it is vital to dealing with the main challenges health systems face: An aging population and the growing burden of chronic diseases against constrained public resources for health.
If only the idea were catching on more quickly.
“Where is Europe in this? Where is Europe?” he said, pointing at a picture on his iPhone that showed a supercomputer he said stored loads of patient data in Kobe, Japan.
Using big data can lead to diagnosing patients faster, especially those suffering from rare diseases. It can help zero in on the right treatment for patients with cancer and other diseases, based on their genetic make-up. The data can be used to monitor infectious disease outbreaks, such as Ebola, through tracking risk maps and better understanding demographic challenges and transmission pathways, according to one recent European Commission report.
National health care systems can track patients using digital records, making it easier to see what drugs they have been prescribed, what medical services they have sought and what the results have been. Analyzing the data across a country could illuminate to national authorities whether too many drugs are prescribed with no effect or costly medical services are being used with little gained for patients’ health.
But though Europe holds more health data than the U.S. — in large part thanks to its universal health care systems — it’s a clunky collection, shackled by privacy concerns, technical and political challenges.
In Romania, general practitioners complain that the introduction of mandatory electronic health records means they’ll have to spend hours typing up patient data, instead of seeing patients. The Latvian health ministry recently shifted to e-prescriptions and experienced major technical problems “since IT systems are scattered and there are no unified interfaces between information providers,” said Agnese Zarāne, a ministry spokeswoman. It took a decade for Germany to pass an e-health law.
A 2011 EU directive committed the bloc to cooperating on e-health to nudge countries toward making their systems interoperable — able to speak to one another. The Commission and 16 EU countries are crafting an eHealth Digital Service Infrastructure to enable the exchange of patient summaries and e-prescriptions across borders. The first electronic exchanges are expected to come online in 2018. The data exchange will feed other projects including the European Reference Networks, which will enable hospitals, research institutes and other groups to share expertise across borders, especially when it comes to rare and hard-to-treat diseases.
Patient consent was a major sticking point during negotiations for the EU General Data Protection Regulation. Cancer research groups worried that requiring patients to give consent every time their data is processed for a new purpose would grind research to a halt.
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Others, meanwhile, argued for full patient involvement and control of data. “Patients are the owners of the data and they should be informed and asked for consent,” said Valentina Bottarelli, public affairs director at Eurordis, which represents the interests of patients suffering from rare diseases.
“Do you think someone whose child is dying from cancer cares about data privacy?” Andriukaitis said, his voice growing louder. “Of course it’s important. But people use it [as an excuse] a lot when they don’t want to do something.”
It’s not only the patients and health authorities that need to get on board to take advantage of big data and digital applications. Health care professionals need to opt in too.
“Every new application has to come with the training: When you develop a new tool you have to engage the end user,” one Commission official said. “They don’t start using things until they see why.”
This story is part of a POLITICO Special Report: Digital diagnosis: Big data in health care