Implementation Status of the Proposal for a
Regulation of the European Health Data
Space in Portugal: Are We Ready for It?
Margarida MATEUS*
a
& Maria LOUREIRO*
a,1
, A. Raquel FERNANDES
a
,
Miguel OLIVEIRA
a
and Ricardo CRUZ-CORREIA
a
a
Faculty of Medicine, University of Porto, Porto, Portugal
*These authors contributed equally to this work.
Abstract. The European Health Data Space (EHDS) proposal aims to establish a set
of rules and governance frameworks to promote the use of electronic health data for
both primary and secondary purposes. This study aims at analysing the
implementation status of the EHDS proposal in Portugal, particularly the points
concerning the primary use of health data. The proposal was scanned for the points
that gave member states a direct responsibility to implement actions, and a literature
review and interviews were conducted to assess the implementation status of these
policies in Portugal This study found that Portugal is well advanced in the
implementation of policies concerning the rights of natural persons in relation to the
primary use of their personal health data, but also identified challenges, which
include the lack of a common interoperability framework for the exchange of
electronic health data.
Keywords. Data Protection, Electronic Health Data, European Health Data Space,
Primary Use of Data, Portugal
1. Introduction
In May 2022, the European Commission (EC) launched the proposal for a Regulation on
the European Health Data Space (EHDS) establishing a set of rules, infrastructures, and
governance instruments, under a common governance framework, to promote both
primary and secondary uses of electronic health data (EHD) [1].
This represents a crucial step in achieving seamless cross-border healthcare in the
European Union (EU) and an important opportunity for using the extensive health data
which is currently neglected by granting access to researchers and public health
authorities to large international electronic health datasets [2]. The adoption of this
ambitious project will accelerate the availability and quality of EHD, improve the
diagnosis and treatment of patients and contribute to the continuity of care across borders.
The EC aims at enforcing the Regulation by 2025 but this deadline depends on its
approval and correct implementation, which relies on the engagement of a highly
complex multi-stakeholder environment (e.g., member states, health providers, citizens,
academia, regulators, as well as industry).
1
Corresponding Author: Maria Loureiro, E-mail: up201405046@med.up.pt
Caring is Sharing – Exploiting the Value in Data for Health and Innovation
M. Hägglund et al. (Eds.)
© 2023 European Federation for Medical Informatics (EFMI) and IOS Press.
This article is published online with Open Access by IOS Press and distributed under the terms
of the Creative Commons Attribution Non-Commercial License 4.0 (CC BY-NC 4.0).
doi:10.3233/SHTI230062
48