The COVID-19 pandemic has catapulted the digital transformation of health and care further to the league of priority topics at EU and national level. As a result of physical distancing measures and stretched health institutional capacities, the provision of healthcare and information via digital channels (telemedicine, online portals, apps, etc.) has become more common in most European countries, and many previously sceptical healthcare professionals and patients have embraced the possibilities afforded by digital innovation. However, the European eHealth landscape remains fragmented, with significant differences in the extent to which digital health and care is integrated into national health systems and part of people’s lives, which also has significant consequences for health literacy.
The advent of digital tools making increased use of Artificial Intelligence (AI) and Big Data, including for the support of crucial public health functions (contact tracing apps being just one well-known example) has also further ignited the debate over what is at stake for end users – patients, professionals, vulnerable groups and ordinary people – and health systems when healthcare becomes increasingly dependent on data-driven solutions. The European Commission’s current priority to establish a Common EU Health Data Space, combined with the ambition to create an ethical approach to AI, are clear indicators of the growing determination to harness the full potential personal health data are holding as an element of health systems strengthening and reform. The promise is to empower patients by collecting and sharing more personal health data to get them more involved in their own health and enable health systems to provide better, more tailored services and treatments and researchers to find solutions to the key health challenges of the 21st century.
However, not everybody occupies the same starting position in the digital race, making ‘empowerment’ a relative term. For members of vulnerable groups, for example, many of whom already living on the margins of society and/or unable to access mainstream healthcare services, divulging personal health information could even lead to further discrimination, stigma and exclusion if data can be traced back to them or if privacy standards are not sufficiently upheld. Concerns such as those voiced over the Council’s recent adoption of the ePrivacy Regulation under the Portuguese Presidency, especially regarding the processing of data for purposes users have not given their consent for, are equally relevant in this context, which links technology, health and fundamental rights.
There is a growing awareness of the ethical dimension of the digitalisation of society, and until now the public health community has been relatively quiet on this front – not least because issues regarding data and privacy protection, cybersecurity, and ultimately how digital technologies function, are difficult to grasp: very few non-tech stakeholders possess sufficient knowledge about data systems and infrastructures.
To explore some of the stakes for public health in more detail, EPHA commissioned a study in 2020 which resulted in a longer Reflection Paper and shorter briefing. Both documents go beyond the health sector and invite the public health community to start collaborating with organisations active in areas like digital rights, gender equality, and environmental and economic justice to deepen the nascent dialogue about how the digitalisation of society influences health on the one hand, and how it impacts on the healthcare experience, and the ability to access quality healthcare