France struggles to balance privacy with big data

The tracking of personal health data is not an idea that sits well with the French.

There is a deep cultural fear among these lovers of fine cheese, good wine and carefully rolled cigarettes that the information collected by the government and companies could be used against them, eroding their cherished universal health insurance.

And so, as Paris prepares to unveil in the coming weeks a sweeping plan to unlock billions of pages of patient data, there is an awareness that public concerns must be carefully managed if they are not to derail what proponents of big data say is an opportunity to deliver safer, better and more efficient services.

“For some, big data is Big Brother,” Health Minister Marisol Touraine said earlier this year as she unveiled a related five-year e-health plan. “I’m convinced big data is an opportunity to seize, as long as we set a direction, rules and safeguards.”

“Criminals know the value of the data and the damage they would cause to hospitals if the data are lost” — Fernando Ruiz, head of operations at Europol’s European Cybercrime Centre

France wants to use patient data for research on public health matters and to transform medical care by boosting prevention and tailoring treatments. E-health players say it’s about time the country harnesses this trove to better tackle issues ranging from spending inefficiencies to health inequalities. They say the country’s obsession with privacy has kept it behind its peers in using so-called big data. 

Legal challenges

A 2013 OECD report found that while it was becoming easier in France to use personal data to monitor health and health care quality, the United States and the United Kingdom were far ahead. “Electronic medical records are just being introduced in France, and it will take years to achieve coverage of the population and to develop the information systems necessary to manage the data,” the report read.

The United States and Britain are working “very hard” to make better use of big data in health, said Elie Lobel, chief executive of Orange Healthcare, a subsidiary of France’s former telecoms monopoly that specializes in digital health services. “Meanwhile, I feel we’re at a standstill.”

Cardiologs, a French startup backed by Orange that uses artificial intelligence to analyze electrocardiograms, turned to the U.S. to collect data to feed its algorithms because that was too difficult in France, Lobel said.

A law passed this year aimed at “modernizing” health care makes it easier in theory for anyone in business or the public to consult aggregated health data. It also allows public and private institutions to use individual and anonymized data for research “in the public interest.”

But the implementing decrees for the law have been slow to come, and the digital health industry says the ministry is being too heavy-handed. “The law creates a technocratic Rube Goldberg machine that sets up more commissions and expert groups, with loads of prior checks,” said Jean-Yves Robin, co-founder of OpenHealth Company, a French provider of health data analyses.

Data miners, scientists and government officials agree on one thing: Opening up France’s health databases could yield precious information on consumption of medicines, reported side effects, and greater insight on the social determinants of health. It could also help fight malpractice in prescription, for instance looking at how many women of childbearing age are still given the anti-epileptic drug Depakine, which has been tied to hundreds of severe birth defects.

Lifting the veil

The national privacy watchdog CNIL, an independent authority, must by law scrutinize requests to access personal health data, and it’s traditionally been cautious, not to mention stretched thin. The number of authorizations it delivers to companies, scientists and institutions to use health data for medical research has doubled over the past five years. A handful of staff processed at least 1,000 such requests last year alone from dozens of public institutions and private groups.

The watchdog has since laid out standards that companies and researchers can pledge to meet to access health data without prior authorization — and face sanctions if they don’t comply. The deal should make things easier for everyone, said Délia Rahal-Löfskog, head of the CNIL’s health department. “Our stance is to protect people,” she said, “but also be a facilitator for companies and researchers. It’s about finding a balance, and that’s what we’re after.”

Thomas Lefèvre, a doctor at the Paris public hospital group AP-HP, coordinated a task force of experts advising the government on the opportunities and challenges of big data in health. France has everything it needs to be among the leaders in the field, he said, citing a skilled workforce with solid training in algorithms, data processing, infrastructure and networks.

The main problem, in addition to managing public concerns, is overcoming suspicion among the medical community. France has about 260 public health databases, according to government data. Nearly every hospital and institution has its own data collection process and base, and jealously protects it.

Lefèvre said France needs to build data “highways” to connect them and should center the system around the patients — ideally using their personal medical records, updated from the doctor’s practice to the hospital. That would require overcoming doctors’ reservations about playing the role of health data collectors.

“When you speak to the college of doctors, they keep focusing on the issue of medical secrecy,” Lefèvre said. “There’s this fear that they are going to be traced and witch-hunted for fraud, they just don’t see what’s in it for them when they imagine it will be extra work.”

This story is part of a POLITICO Special Report: Digital diagnosis: Big data in health care.