POLiN
The political conditions of interoperability in European digital health policies
Objectives
Definitions
- Digital health: the introduction of Information and Communication Technologies (ICT) in healthcare: online medicine, Electronic health record, digitalised prescriptions…
- Information Technology (IT) standards: technical norms that regulate the functioning of digital applications: accessibility, structure, presentation of data, security, privacy settings
- Interoperability: refers to the ability of computer systems to work together even if they are owned by different business or state organizations: ie. sending an email to a mailbox owned by a different company, reading a document which was written with another software
- Secondary use of data: when data is used for a different purpose than the one for which it was collected: ie. health data may be collected to allow for the reimbursement of healthcare services (primary purpose), and then used for medical research (secondary purpose)
Today, digital applications are an integral part of our lives. Checking the weather in the morning, buying a train ticket in the afternoon or watching our favourite TV show in the evening: our interactions with digitalised and connected applications are numerous and affect each of our everyday activities.
This is also true for healthcare: today, numerous applications are available to help you monitor your physical activity or to improve your health (period and pregnancy trackers for instance). If a lot of these applications belong to the private sector, governments and national health services are also concerned by the digital transition. Most of the time, the development of digital health public policies results in the creation of Electronic Health Records for citizens, or into the public implementation of services such as telemedicine or ePrescriptions. These connected applications are thought to improve coordination between health professionals, leading to an increase of the quality of care as well as a better efficiency of health services.
To create such applications, governments use technical IT standards, which define the way these digitalised systems work. As users of these applications, we know to what extent standards and designs strongly affect our digitalised experience (ie. is the application/website easy to navigate? Do I find every information I need, written in a visible way? Is it convenient to use?). But standards also influence our lives in a more subtle and imperceptible manner: they may, for instance, create or reinforce inequalities between citizens, or pose threats to their privacy and to the protection of their fundamental rights.
For example, the way data are presented in an Electronic Health Record may be more tailored to the need of specific segments of the population while excluding other, less represented minorities. In addition, the way data is coded in applications may greatly contribute (or impede) the use of health data for secondary purposes, with strong effects on privacy.
Yet, as citizens, we do not know much about these IT standards and their implications, nor do we know much about the decision-making processes underpinning standards adoption at the political level.
The aim of the POLiN research project is precisely to explore political decision-making about digital health standards at the European Union (EU) level. It will explore which actors took part in the decision-making process (member states and European institutions, but also the internet giants) and see how influence strategies affected the content of European decision-making on two case studies: COVID-19 contact-tracing applications, and the European Health Data Space.
Case studies
During the COVID-19, the European Union was particularly active in digital health: as the main actor in charge of member states’ cooperation in the fight against the virus, it successfully used the digitalised aspect of healthcare to exert political control on member states’ responses to the pandemic.
COVID-19 contact-tracing applications
In 2020, when no vaccines existed to fight COVID-19, the main policy response that was considered by governments to end lock-down measures was to implement an efficient, digitalised system of contact-tracing applications.
In this process, each member states began to develop its own national application, some of them based on a so-called ‘centralised system’ (where users’ data was gathered in a centralised database) and the other on a ‘decentralised system’, where data remained on users’ phones.
Of course, the two systems implied very different levels of privacy and data protection, but also different possibilities for member states’ government to monitor the pandemic.
To make sure that these national applications would work throughout European borders, the European Commission tried to incite member states to use the same basic system.
This initiative resulted in intense (yet technical) debates about the merits of the different systems, with no agreements found between all the member states.
European Health Data Space
Policy responses to pandemic and communicable diseases remain under the jurisdiction of member states. This phenomenon was particularly visible during the COVID-19 crisis, as each member state implemented its own set of measures to contain the spread of the virus. Despite its limited competence, the EU has a mandate for helping member states to coordinate their policies at the EU level: this is precisely the role of the European Center for Disease Prevention and Control, whose aim is to share data about epidemics between member states. Yet, sharing digitalised health data in the EU is a difficult task, as each member state has its own rules on the matter. During the COVID-19, this issue was put on the top of the political agenda: the miscellaneous data sets produced by the member states created significant obstacles for the monitoring of the pandemic at the EU level. Since then, ensuring the compatibility (interoperability) of member states’ health data is at the core of the work of the European Commission, who wrote a proposal for a regulation to create a European Health Data Space in 2022. This regulation is likely to affect the way health data are collected, stored, and the rules according to which they may be shared with other actors for secondary purposes, with strong effects on data privacy and fundamental rights.
The aim of the project is to trace-back the debates about these two EU-level decision-making processes, to understand who were the actors and their stances on these topics, and who got the main influence on the digital health standards adopted at the EU level, with what effects in terms of equality between citizens and privacy. A specific attention will be dedicated to the representation (or absence of) of citizens in this process.
Events
7th February 2024, 2 pm - project presentation
The project will be presented at the Center for Comparative International Studies in Venice, at Palazzo Cosulich (conference room).
Chloé Bérut, MSCA fellow at the Department of Linguistics and Comparative Cultural Studies, will present her work on EU policy-making in the area of digital policies. The presentation is based on a systematic literature review conducted as part of the POLiN research project. It will summarise what scientific researchers know about policy-making dynamics in this area (role of specific actors, type of policy sectors, major policy issues). Avenues for future research will also be presented, including in the context of the POLiN project which is about EU digital health policies. In particular, the presentation will discuss the concept of ‘EU digital sovereignty’ and the way it reconfigures power relations in a digital age. The conference will be held in English.
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Poster 7/02/2024
"Digital policy-making in the European Union" |
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