Vision & Mission EHDS Jurist

Mission and vision: health data as a public good

Health data are unique. They are intimate—no one wants their employer or insurer to see them. Yet they are also invaluable: to the physician aiming to provide effective patient care, the scientist developing new medicines, and the policymaker seeking to determine whether specific healthcare interventions work. This tension—between protection and availability—is central to the work of Antoinette Vlieger and forms the core of her mission and vision regarding the EHDS and health data.

The dilemma: three conflicting interests

Three fundamental interests constantly clash when it comes to health data.

• First: protecting the privacy of current patients versus the interests of future patients. If scientists do not gain access to health data today, they cannot develop better treatments for tomorrow. We owe something to future generations.
• Second: medical confidentiality versus the need for oversight. Doctors can only do their jobs effectively if patients trust them and everything remains confidential. However, there are unfortunately bad doctors as well; therefore, to protect both patients and the affordability of the healthcare system, that confidentiality sometimes needs to be breached.
• Third: data availability for care provision versus the right to confidentiality. An unconscious patient with diabetes benefits from healthcare providers being able to quickly access their data. Yet, that same right of access could cause harm in the wrong hands.

Legislators must weigh all these interests and translate them into clear rules—rules that provide legal certainty so that everyone knows where they stand. This makes the law surrounding health data particularly complex, but also exceptionally interesting.

Vision: The EHDS as a historic opportunity

The European Health Data Space↗ (EHDS) is not merely a bureaucratic European compromise. It is a well-conceived piece of legislation that legally enshrines access to health data while simultaneously protecting patient privacy. The people working on this in Brussels are knowledgeable and well-intentioned—a combination rare enough to warrant serious attention.

The EHDS offers an opportunity to transform the sharing of healthcare data from a favor into a right. Scientists, healthcare organizations, and policymakers will no longer have to beg for access; instead, they will be able to claim it as a legal right. However, this opportunity will only be realized if the legislation is effectively implemented and correctly applied. That is precisely where things sometimes go wrong in practice.

Moreover, it is important to remember that the EHDS is just one component of the broader legal framework governing data. Certain issues—such as data availability via APIs—are not included. This is not because the EU deemed them unimportant, but because they are already covered by other regulations. The EU is building a robust regulatory framework for a completely new phenomenon—data—that is crucial for science and innovation.

Mission: contributing in a lawful and privacy-preserving manner

The mission of Antoinette Vlieger (LL.M., Ph.D.) is clear: to contribute to the broader availability of health data—in a lawful and privacy-preserving way—for anyone who can put it to good use.

This is not an abstract objective. In practice, it means helping organizations understand their rights and obligations, and how to correctly apply the EHDS, the GDPR, and Open Data legislation.

Working with the EHDS legal expert

Dr. Vlieger works with hospitals, research funders, pharmaceutical companies, government bodies, and international organizations. She provides legal advice, conducts commissioned research, teaches, and publishes—in both Dutch and English.

Do you have a legal question regarding health data, the EHDS, or the GDPR? Get in touch by clicking here; she would be happy to discuss the matter with you.