Health care 2024: Privacy in the age of digital medicine
This article is part of “Health Care 2024,” a survey-driven series of online debates in which POLITICO will explore how the European Union can best tackle health policy.
Big data has the potential to provide personalized treatment, help researchers tackle the latest diseases and better anticipate epidemics. But it also requires patients to entrust governments and companies with vast troves of personal data.
In this installment of Health Care 2024 — a series of symposiums asking leading experts to weigh in on the health care priorities for the next European Commission — POLITICO asks: Can the EU gain benefits from sharing health data without weakening privacy — and if so, how?
Make data available
Duane Schulthess is managing director of Vital Transformation.
The problem is actually very simple: Big data is useless without access to data. Period. And in the EU that’s an especially big challenge.
In the U.S. data can be shared or commercialized if it is de-identified and anonymous. This has created a robust market for data-driven research. Even small amounts of data, such as for the CAR-T gene therapy used to treat cancer, can help governments make decisions on pricing and access. Meanwhile, China, a country of 1 billion people, is moving toward a national registry. Even if a condition is extremely rare — say, one in 1 million — that means a Chinese database could yield 1,000 potential research subjects.
Europe must realize that it is possible for privacy concerns to hamper research and cripple industry. R&D will move where data access is available.
And while patient concerns are at the center of the EU debate, they’re not the only factor holding back access to data. Europe should have at its disposal the most robust longitudinal health datasets in the world. It doesn’t, often due to localized politics and the Balkanization of data ownership for petty political gains. As a result, we don’t have patient-level datasets large enough to do the type of research that is increasingly needed.