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- Convenors:
-
Luca Marelli
(University of Milan)
Klaus Hoeyer (University of Copenhagen)
Tamar Sharon (Radboud University)
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- Format:
- Traditional Open Panel
Short Abstract:
This panel focuses on the imaginaries and socio-political dynamics accompanying the establishment of cross-border health data infrastructures. We invite papers exploring diverse initiatives, from the European Health Data Space to corporate infrastructures, through to non-for-profit initiatives.
Long Abstract:
In tandem with intensified digitization of healthcare, a diverse set of actors is now seeking to establish exchanges of health data across national borders. From national governments to supranational European institutions, from health research networks to corporate entities, significant efforts are underway for establishing or maintaining platforms and infrastructures purposed towards extensive cross-border health data sharing.
With this panel we wish to invite reflections on how to explore and describe the current desire to exchange data across borders and implications of the new infrastructures that are being established. Data are desired for multiple purposes, and the involved actors are organized in myriad ways. As a consequence, 'cross-border data infrastructures' are 'wobbly phenomena' and difficult to regulate and manage. We invite papers on both large-scale public initiatives, such as the European Health Data Space, commercial companies specializing in data accumulation, and smaller not-for-profit activist attempts to harness data across borders. We are particularly interested in papers that reflect on how data infrastructures are shaped by specific imaginations as to their envisioned use, value, and who are the intended ‘end users’, and how data infrastructures become sources of broader social and political transformations.
Accepted papers:
Session 1Michaela Mayrhofer (BBMRI-ERIC)
Long abstract:
Health data is simultaneously a resource for health care and health research. Health data is a potent source for data economies of both the public and private sector but also an object, if not an agent, defining, inscribing, redefining, and challenging risk groups. In the health sector, data infrastructures are operating at the intersection between health care and health research. Such data infrastructures gain a new meaning through recent technological developments, political initiatives and legislative frameworks. All the initiatives have in common that they want to govern the flow of data for a specific purpose. The ambitious initiative of the establishment of a European Health Data Space, for instance, distinguishes 'primary' (health care) from 'secondary use' (health research) of data. What it does share with traditional data infrastructures are questions of governance, interoperability, potentiality, accountability and acceptance by patients and citizens. Ultimately, what needs to be explored are questions of power and access. Who has the decision making power to define what is and what is not moved across borders? How do those borders or boundaries look like across health research or the health care sector? What potentiality is inscribed in this "border control"? Is control over data an imaginary? Who in the end can exercise which forms of control?
Anders Korsgaard (The National and Kapodistrian University of Athens)
Short abstract:
The paper focuses on the implications of the envisioned European Health Data Space upon biobanking cross-border data sharing practices. It explores the reshaping of biobanks to fit under the EHDS visions, through a comparative study of the Greek and Norwegian biobanking infrastructure.
Long abstract:
The European Health Data Space (EHDS) is envisioned to establish a common framework for data sharing, aiming at capitalizing on the imagined potential of a safe and secure cross-border exchange, use and re-use of health data. Visions for better health and biomedical research in Europe thus become key arguments in favour of sharing health data.Within this framework, biobanks and biobanking networks, like the BBMRI-ERIC, are endorsed as key infrastructures with expectations to generate value through biomedical research, made possible by the creation, storing, and sharing of samples and data. However, reshaping biobanking to fit under the EHDS could be translated into tension with old practices and arrangements. Being attentive to visions in data practices and research infrastructures means to explore how they lead to sociotechnical rearrangements. Pooling of health data for research in many ways rests on the infrastructuring of biobanks, i.e. building enabling environments for quality data sharing. It therefore becomes important to look at how the EHDS affects the infrastructure of biobanks (and BBMRI-ERIC). Looking into infrastructuring means bringing the practices of a set of actors – ranging from researchers, up to policy makers - into one socio-technical network.
The paper will present interview data from actors connected with the research infrastructure of BBMRI-ERIC in Greece and Norway, focusing on the uses of visions specifically in the discussions surrounding biobanking, while providing preliminary findings regarding the ways the EHDS visions are being contested and/or stabilized and how the actors themselves envision health data sharing going forward.
Vittoria Porta (European Institute of Oncology IRCCS (IEO)) Carlo Botrugno Ine Van Hoyweghen (KU Leuven) Luca Marelli (University of Milan) Sebastian Kalucza (Umeå University) Anne-Marie Fors Connolly (Umeå University) Federica Lucivero (University of Oxford) Giuseppe Testa (European Institute of Oncology / University of Milan) Naja Rod (University of Copenhagen)
Long abstract:
The Covid-19 pandemic has represented the first global health emergency to be tackled through widespread data collection and processing via a broad array of digital health technologies. Throughout Europe, data infrastructures for the acquisition, processing, and management of Covid-19 health-related data were either implemented ex novo or ‘repurposed’ towards this end. This study targets the implementation of Covid-19 health data infrastructure in four European countries - Italy, Sweden, Denmark, and the UK (England) - to empirically investigate challenges related to technical, ethical, and legal aspects of secondary uses of Covid-19 health-related data and the integration of health data repositories, particularly in view of the proposed implementation of the European Health Data Space (EHDS). Key aspects probed in this regard include the technical design and data access requirements of the implemented infrastructures, legal and ethical considerations for secondary uses, the expectations for value creation underlying the infrastructures’ implementation, access by corporate actors, and the challenges that must be addressed to ensure prospective alignment with EHDS requirements and the social viability of the EHDS itself.
Andrea Martani (University of Basel)
Long abstract:
It is common for policy documents and for the broader regulatory structure of health data projects and infrastructures to declare the objective to safeguard individual control over data and privacy, whilst at the same time facilitating data flows. The resulting balance between these two elements is not a stable one: novel imaginaries about their end use(rs) can shape how data infrastructures and their governance evolve.
In this presentation, I will consider how these mechanisms operate by presenting some examples from the Swiss context. Switzerland has traditionally ranked very high in respect to its healthcare system and biomedical innovation. Health data infrastructure, on the contrary, has traditionally lagged behind. Many initiatives were started to address this issue, seeking to improve data flows, but also promising to respect the importance of (individual) control that features prominently in societal debates on this issue. Drawing on exemplary changes in the governance of new data infrastructures (e.g. the Electronic Patient Dossier and the new federally organised cancer databases), I will reflect how initial promises of individual control have changed, justified by newly arisen necessities of (more) seamless data flows, and by imaginaries around international data infrastructure projects such as the European Health Data Space. In so doing, I will argue that novel imaginaries around ideas of data use(rs) and data sharing ‘move the goalpost’ of what the governance of health data infrastructure consider the ‘right’ balance between the often-antithetical promises they entail (e.g. individual control and free data flow).
Fatma Sumeyra Dogan (Jagiellonian University)
Short abstract:
The European Health Data Space proposes a secondary use framework and establishing Health Data Access Bodies in each Member State. These bodies oversee processes and make decisions on data access applications. The study investigates whether HDABs can revolutionize healthcare data accessibility.
Long abstract:
The potential of AI to improve healthcare is widely recognized. It is a known fact that to develop AI technologies, data is a fundamental element. However, accessing high-quality health data is challenging due to special protection under the General Data Protection Regulation. The European Health Data Space (EHDS) aims to be the first domain-specific European data space under the European Strategy for Data policy, overcoming this hurdle stated as one of its goals. EHDS proposes to address this issue with its secondary use framework provisions. According to Articles 33-58, each Member State will establish a supervisory authority named Health Data Access Bodies (HDAB). HDABs will oversee the process and act as the decision-making body on several issues in the operation of secondary use. Many tasks are envisioned for HDABs, but the most pertinent ones could be summarized as follows: data holders shall provide the elements of their datasets (Art. 55/2), and they will make the data categories available to HDABs (Art. 33/1). Data access applications will be decided by HDABs (Art. 37/1), and while evaluating these applications, they will assess the application regarding the purposes for data use (Art. 34 and 35). This study will explore if this framework would make sense in actualizing the proposed system. As an initial finding, it is not clear how the system would prevent forum shopping. Thus, the question of whether HDABs can revolutionize healthcare data accessibility will be investigated.