Europe Awaits Proposed New Framework for Sharing Health Data

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations.

The move is expected to help encourage evidence-based healthcare, spur research in developing therapies and treatments, and inform health-related policy decisions.

Sharing healthcare data is especially important for rare disease communities, where the limited number of people with a disorder often makes it difficult to conduct large studies, according to a press release from EURORDIS. The group, an alliance of nearly 1,000 rare disease patient organizations from 74 countries, is directly involved in crafting the new framework.

“Given the high relevance of the upcoming legislative proposal to the rare disease patient community, EURORDIS will be actively contributing to shaping this legislation, which will be outlined in a position paper to be released this summer,” the alliance stated. “In particular, we will make sure the legislation reflects patients’ needs — both in terms of developing robust standards to ensure secure, ethical and responsible data sharing and allowing health data to be seamlessly shared across borders to benefit every person living with a rare disease in Europe.”

Because healthcare data is highly personal, a number of European Union regulations tightly control if and how these data can be shared. At the same time, analyzing healthcare data is a crucial part of scientific research that can help to improve care.

According to EURORDIS, 97% of people with a rare disease say that they are willing to share their data to help promote research into their disorder. Nearly as many are willing to share their data if it helps to advance research for diseases other than their own.

At the same time, 80% of rare disease patients want to have control over their healthcare data, to avoid this information being used in ways that lack their express permission.

EHDS aims to provide a framework that will make it easier to share healthcare data for research purposes across national borders, while still ensuring adequate data security. Its design is based on three main pillars: strong rules governing data exchange, high-quality data, and a strong infrastructure to manage data.

“Overall, it promises to advance research, diagnosis, treatment and care for people with rare diseases through increased and meaningful data sharing,” EURORDIS reported.