This post was written by Roxana Varvara Boboc, Research Master student in Media Studies at the University of Amsterdam
As the EU Digital COVID Certificate enters the application, the digitalisation of health urgently requires critical reflection. In a previous GDC blog post, I have discussed how a public-private alternative to contact tracing solutions has pushed the EU beyond regulation and towards the development of digital solutions to pressing public needs. Health is a particularly tricky sector in terms of digitization because of the sensitive nature of health data and the cumbersome governance of digital health information. Moreover, who gets to design these solutions and to which ends? Does the European Union look for improved quality of healthcare for its citizens, or does it have other objectives? As it stands, the development of new technologies seems to be a top priority, whereas there are other pressing issues to solve before attempting to reshape an entire sector. This discussion highlights the key interests and concerns at play in the digitalisation of health outcomes as they are derived from European documents and reports.
Digital sovereignty or global competition?
Whereas digital solutions might indeed provide benefits for both patients and the economy as deduced from the overall digital strategy for the digital decade, such decisions should be critically debated before being implemented. The fact that the European Union urges to adopt the newest technologies – such as artificial intelligence, supercomputing and 5G – shows its greater interest in commercial opportunities rather than the provision of safety requirements. Evgeny Morozov talks more broadly about this phenomenon and describes how ‘solutionism’ discards political alternatives. The COVID-19 pandemic provided the context for this widespread ideology, which merely amplified the digitalisation strategies at the cost of privacy and even democracy. Indeed, even though access of patients to their data and personalised medicine are the main priorities of eHealth, European innovation within the Digital Single Market pervades EU communication and policy briefs.
The pandemic has yielded the right opportunity for the EU to call for timely innovative solutions – where BioNTech was the ultimate example of why increasing regulatory flexibility and skipping certain steps along the way is the most fitting approach to achieving the breakthrough which the world desperately needs. But the EU was also in need of establishing itself as an industry player within the health research market. The Joint Research Centre (JRC) has underlined how technological improvements risk being appropriated by foreign actors due to the EU’s underdeveloped technology commercialisation capabilities. In this sense, the EU has prioritised testing and experimentation at the expense of solving the issue of fragmented repositories and ICTs used EU-wide. A recent EIH Health report advocates for anticipatory regulation and sandboxing – which is an environment for controlled innovation, where new technologies such as AI, can be tested and monitored by Member States’ competent authorities and overseen by the EU. This type of flexibility would encourage the industry to be more competitive and to engage with technological advancements. It would also allow the EU to coordinate development actions within the bloc. The issue arises when ‘innovators’ are allowed to bend trials and certification rules for the sake of releasing their products faster in such a high-risk sector.
While the EU discourse invokes the citizens’ and patients’ benefits, it mostly addresses industry representatives, small and medium-sized enterprises, and ‘innovators’ who are invited to step into this new, friendly, and expanding market. The digital transformation of healthcare is heavily dependent on large datasets which would enable the exchange of numerous electronic health records and secondary materials deriving from these data. However, for these exchanges to happen, the EU should focus on solving the issue of the heterogeneity of electronic health records before aiming to create the foundation for cross-border, public-private collaboration. Otherwise, without the digitized records and data infrastructures to host them, there can be no eHealth. Moreover, according to the European Association of Hospital Pharmacists, involving healthcare professionals in the process is crucial to guarantee a valuable output for the sector. What the Communication on eHealth indicates, though, is a desire to produce competitive digital products for the health market. Is, then, public wellbeing the main incentive to develop a substitute for already existent health information systems? Or do commercial interests inform the EU’s efforts?
Data battleground: market vs. patient
All of these plans require large quantities of qualitative data. This issue is particularly complicated to approach mainly because of sensitive information. But the debates pertaining to specialized expert groups in the field propose a different concern: namely, what is the role of the General Data Protection Regulation (GDPR) in the health sector and how can it be worked around so that the industry can benefit from a larger amount of data and critical insights? JRC itself has framed GDPR as a restrictive force that impedes innovation rather than a regulatory asset that sets the EU apart from its global adversaries. The issue with GDPR’s stricter rules on data handling brings forth clashing interests: those represented by protecting fundamental rights, including the digital ones, which contrast with the benefit versus risk debate on whether permissionless innovation would serve the EU’s ambition to advance in a new market. This discourse is problematic because it allows for preferential rule-bending by competitive, private entities at the cost of legal uncertainty and that of threatening the integrity of citizens’ rights for the sake of possible critical insights brought about by data under the seal of privacy. The COVID-19 pandemic has triggered further debates on “the trade-offs between privacy and public health on the one hand, and around the need to promote innovation by start-ups on the other”. The EU is then faced with the challenge of balancing innovation and access to data in privacy-bounding conditions where the economic benefits are at odds with the rights of citizens. This shows a clear interest from the side of the EU to grant ‘innovators’ enough data to produce the much-desired and globally competitive outputs.
The market clearly remains the central focus of digitalisation endeavours, and clarifying the data collection and usage framework is probably the most pressing project to be accomplished. Several solutions are considered to help solve this, but one which deserves particular attention is the common European Health Data Space. This implies the development of infrastructures, tools, and computing capacities, along with the digitalisation of health records; it should allow safe cross-border exchange and secondary usage of data by opening up new possibilities for the industry to build on top of it. ‘Data for the public good’ is valuable insofar as it leads to creating European leverage and building an extensive, interoperable database that would allow the EU to act as a global player in its own right. The issue is that the technicalities of this ambitious aim are not yet decided, generating uncertainty in regards to dealing with and implementing this type of measures within the bloc. Besides, the fragmentation in terms of health data management framework and the lack of tools to grant interoperability across health systems makes this mission even harder to achieve – both on an operational and legal levels. The current framework does not clarify who is responsible for data handling within the health sector, as it blurs the line between health authorities, research institutions, or companies. Thus, the danger that comes with innovators’ advocacy is that health data is negotiated as a commodity for either research or service and product development.
Green pass, red flag?
The European Union’s health digitization strategy triggers a fair warning regarding its foundational intentions for speeding up digital solutions’ uptake. Citizens might indeed benefit from better treatment, but that is not where the stakes are. The problem is that commercial interests seem to overrule the EU’s duty to safeguard fundamental rights above all else. The EU spotted a potential crisis opportunity along with the pandemic and encountered a chance to gain notoriety in an emerging industry by pushing its strategy on the digital transformation of health into a market penetration occasion. What is framed as an essential condition of development (i.e., digitalisation), is in fact a chance to create a new industry where the efforts are currently lacking and where the EU is far behind. Indeed, the EU could contribute to a substantial modernisation of healthcare and its data infrastructures, but when fundamental rights are at odds with commercial interests there is room for genuine concern regarding its action plan and adjacent priorities. After all, the primary concern should be protecting democracy and making sure technological solutionism does not take over the right to privacy. Ultimately, the right to contest values and responsibly engage in negotiating public interest is proof of a functional democracy where the public interest is constantly expressed and reinvented in such a way that it is not confused with economic value.
Roxana Varvara Boboc
Roxana Varvara Boboc is a research master’s student in Media Studies at the University of Amsterdam. Her research interests range from platform and infrastructure studies, platform and gig labour, surveillance capitalism, to digital memes and digital cultures. She is interested in a critical exploration of public-private power structures. She became preoccupied with these topics due to her experience in the research department of a public institution, her previous degrees in communication and marketing, as well as her recent teaching experience at the UvA in Digital Methods. (Twitter: @roxana_varvara)