Sunday, 7 June 2026

Public Consultation Feedback: European Health Data Space - dataset descriptions

 MSA gave feedback to the EU Public Consultation on European Health Data Space - dataset descriptions as follows:

Malta operates with a relatively integrated personal identity infrastructure, including universal personal identification numbers used across government departments throughout individuals’ lifetimes. This may facilitate cross-border data sharing and implementation of the European Health Data Space (EHDS). However, it also concentrates responsibility for data governance and public trust within a limited institutional ecosystem, potentially amplifying the effects of weaknesses in oversight or transparency.

Not all EU Member States use a single universal identifier across systems. Although the eIDAS framework establishes mutual recognition of national electronic identities, implementation remains uneven, reflecting different national infrastructures and approaches to identification. The proposed European Digital Identity Wallet may address some of these inconsistencies, but it is not a neutral tool.

The Wallet structures how individuals are recognised through predefined healthcare attributes shaped by institutional, technical, and regulatory priorities rather than lived realities. Identity is therefore not simply verified but constructed in ways that determine which aspects of a person become visible and actionable within cross-border healthcare. This may unintentionally privilege standardised and system-compatible profiles while marginalising individuals with incomplete, fragmented, or difficult-to-translate records, including those with limited engagement in digital systems. In this sense, the Wallet does not merely enable access but also shapes the conditions under which access becomes possible.

Questions also arise regarding who is responsible for simplifying, categorising, and interpreting healthcare data across systems. Whether these processes are driven primarily by software developers or medical experts has important implications for how healthcare information is understood and operationalised. Existing research shows that even medical definitions and diagnostic categories are influenced by broader social and institutional dynamics, raising concerns regarding equity, exclusion, and representation.

Article 5 allows healthcare providers to request additional information directly from individuals where healthcare attributes in the Wallet are incomplete. In practice, this means that data disclosure is not entirely optional, and participation in cross-border healthcare may depend on an individual’s ability to provide system-recognisable information. Furthermore, Article 3 states that each Member State shall determine the healthcare attributes used to verify identity, yet it remains unclear how vulnerable individuals or those with low digital literacy and limited digital access will be supported within this framework.

It is therefore recommended that EHDS implementation, including identity verification and cross-border data exchange, involve structured engagement with social scientists, patient groups, and civil society organisations. Greater transparency is also needed regarding how healthcare attributes are defined, standardised, translated, and interpreted across Member States, including who is responsible for these processes. Safeguards should be incorporated for individuals with limited digital access or literacy. Recognising that identity systems are not neutral is essential to avoid reproducing existing inequalities. Without such considerations, technically robust systems may fail to ensure socially equitable access to healthcare.