The European Health Data Space: is there room enough for all?

Last month, EPHA responded to the European Commission’s public consultation on the creation of a European Health Data Space (EHDS) based on inputs received by our members. Generally speaking, the diversity of our membership is reflected in their engagement with digital technology, with disease-specific organisations and certain health professional groups already a lot more involved in projects and having built up practical experience, which isn’t necessarily the case for organisations representing vulnerable communities or other stakeholders less exposed to new technology. Hence EPHA’s focus on digital has always been on ‘inclusion for all’ as we recognise the many factors (e.g. social, economic, health, environmental, gender, literacy, etc.) that determine whether and how people are accessing, interacting and acting upon information emanating from digital health tools, which are now more and more dependent on ‘big’ personal health data.

The work of the eHealth Network, created under the 2014 Cross-border Healthcare Directive, has laid the foundation for Europe to develop the necessary infrastructure to enable health data sharing between patients, healthcare providers / professionals, researchers, policymakers and regulators, but in practice many of the upcoming, potentially pan-European elements such as interoperable ePrescriptions, patient summaries or Electronic Health Records are still out of reach for the majority of people living in Europe apart from a handful of countries that were already ‘eHealth ready’ years ago.

However, it’s not difficult to grasp the positive effects of objectives outlined in the public consultation, which range from facilitating healthcare delivery at national level and across borders to promoting the increased use of digital health tools and services to accelerating health research and enabling regulatory decisions, improvements whose value is hard to deny in a world in which technology has become a key essence of economic and social progress.

Nonetheless the EHDS consultation includes a number of important practical questions that would ideally require a broader dialogue with civil society and other health stakeholders as part of the ‘next steps’ in creating this space. For example, while EPHA’s response highlights the potential value of more EU-level oversight and powers to ensure uniform technical standards and requirements, as well as smooth interoperability to avoid a future two-tier digital Europe, it is equally important to address specific national and regional challenges that may not fit a ‘one size fits all’ model. Similarly, whereas access to health data for research purposes is obviously very important to improve prevention and treatment of many diseases and health conditions, the devil is in the detail as revealed by the questions about the need for additional rules on conditions for access to health data for research, e.g. pertaining to data categories, their format, eligibility to view them and security.

Ultimately, EPHA believes that the same safeguards that apply in the analogue world should also apply online: voluntary labelling schemes and other measures put in place by industry tend to be less effective than proper and mandatory mechanisms administered by governmental bodies, but excessive control could also stifle the timeliness and effectiveness of certain health data interventions, which in turn would threaten Europe’s position as an innovation leader.

But as EPHA has pointed out for many years, it is perhaps not so much the what but the how: any decisions taken without fully understanding end users’ concerns and real needs will most likely result in an exclusive ‘VIP zone’ rather than an inclusive EHDS – which is why more must be done to reach out to ordinary people, including civil society groups representing them, to build up capacity and identify the real barriers to the EHDS becoming a reality as an integral part of resilient health systems that cater to all. Otherwise, trust will not develop and digital hesitancy may spread.

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