Patient-controlled Health Data: The Rise of the Patient Wallet

Insights from Panel 5 — MyData-TRUST Data Privacy for Health Summit, Brussels, 29 January 2026

At the MyData-TRUST Summit in Brussels, the concept of the Patient Wallet discussed during this panel session emerged as one of the most interesting shifts in health data governance. The opening metaphor sets the tone for the discussion: the sector is driving fast, and the question is whether the brakes are good enough. For data controllers and processors, patient wallets represent both the accelerated innovation and a potential safety mechanism.

What Is a Patient Wallet?

A patient wallet is a secure, user-controlled digital repository that allows patients to store, manage, and possibly share their health data and credentials. The concept built on the EU Digital Identity Wallet (EUDI) under the electronic IDentification, Authentication and trust Services(eIDAS Regulation (EU) No 910/2014)  . The concept extends digital identity into healthcare — allowing patients to hold verifiable credentials directly on their personal device.

Through two projects presented at the panel, it became clear that the wallet concept is closely connected to the broader objectives of the European Health Data Space (EHDS). It holds critical data categories, not the entire health record. Six categories have been identified for cross-border sharing, but the reality remains challenging: health data across the EU is scattered, heterogeneous in quality, and often error-prone. EHDS maturity varies considerably across Member States.

The MyHealth@MyHands EU project aims to put the EHDS vision into practice. Similarly, the Digital COVID Certificate served as an early proof of concept for the verifiable credential process that patient wallets may require at scale. The AIDAVA project, an AI-powered virtual assistant using a Personal Health Knowledge Graph (a from of digital twin), seeks to help patients curate, structure, and validate their own data.

Then panel also presented  Andaman7, an AI-powered smartphone application thatalready enables  patients to access and manage their health data in clinical trial and pharmaceutical contexts. Wallet-like initiatives are also emerging in the United States and Australia, while Belgium’s national eID app ItsMe illustrates how existing digital identity infrastructure may support future  health wallet functionality.

Identity, Privacy, and Compliance

From a legal perspective, patient wallet raise signifance compliance challenges, because they sit at the intersection of eIDAS, GDPR, and EU cybersecurity legislation,and compliance with all three frameworks is required simultaneously.

In practice, when identifiers are reused across systems, identity itself becomes a trace: even metadata alone may reveal a patient’s journey through healthcare systems without accessing the underlying health data. Risks of function creep and data correlation are therefore real, and there are vulnerabilities in the EHDS identifier model that could potentially allow identity spoofing or misuse if sagefuards are insufficient.

Data minimization by design, unlinkability, strict purpose limitation, accountability, and genuine user control therefore be built in from the outset rather than retrofitted. Under eIDAS, wallet use is voluntary and intended to be accessible to all citizens, with qualified electronic signatures providing a high level of assurance.

Key Safety Challenges

• On children’s data — a topic that remains relatively underexplored int his context — guardians typically control data on behalf of minors, but the legal and technical frameworks will need to balance parental consent with the progressive inclusion of children’s assent.
• Data quality and safety issues also emerge as a central concern  : individuals may wish to correct or modify their records in order to obtain what they believe to be  the most efficacy treatment. This may reframe data quality as a patient safety issue rather than solely a data governance issue. The guiding principle for what to share with patients need base it on the patient’s concerns and the potential for harm, rather than a blanket approach.
• Data stewardship to build – ensuring the patient wallet movement does not become another round of data harvesting by large technology companies. It shall truly serve patients’ medical needs.
• It is acknowledged that some populations and countries may benefit from these technologies earlier than others,  but inclusive design must remain a priority.

Opportunities/Looking Ahead

The patient wallet changes the situation in which patients have traditionally been passive recipients of a system that their most sensitive information behind institutional walls. With such tools, they may gain the ability to verify whether  their records are accurate, complete, and up to date, helping to support  better treatment decisions.

More importantly, it may provide patients with greater agency and control on their own care, potentially contributing to improvements in the quality of care.

The patient wallet  is emerging as a potential component of Europe’s future digital health architecture, enabled by the EHDS, the EUDI wallet, and a broader policy shift toward data sovereignty and patient empowerment.

However, success will depend on more than technology alone: interoperability, verifiable credentials, transparent consent mechanisms, genuine patient choice, and implementations that serve patients’ interests rather than only digital platforms will ultimately determine whether the promise of the patient walelt becomes a sustainable reality.