On 6 December 2018, the European Economic and Social Committee (EESC) published an opinion (“Opinion”) addressing the European Commission’s recent Communication on the digital transformation of health and care in the Digital Single Market (issued 25 April 2018).
The EESC is an advisory body of the European Union (“EU”) comprising representatives of workers’ and employers’ organisations and other interest groups. It issues opinions to the European Commission, the Council of the EU, and the European Parliament. Although not legally binding, these opinions may serve to inform the legislative process.
This EESC Opinion voices strong support for the Commission’s vision to transform the healthcare sector across the EU through digitalisation and technological innovation. It lists a variety of benefits that the EESC believes will accrue from this modernisation effort – including more time for patient care, greater health literacy, new digital tools, and the improved interoperability of systems. But hand-in-hand with this endorsement, the EESC also raised several issues that it believes lawmakers should address to ensure that people remain “at the centre of care” throughout the process.
First, it noted that the right to access one’s health data and the ability to control the onward sharing of that data should be at the core of digital health transformation. Here, the Opinion cited the EU’s General Data Protection Regulation (“GDPR”) and said its rules must be adhered to whenever designing and implementing new technologies in this sector.
Furthermore, the Opinion presents a discussion on the ownership of health data. It offers a list of questions to consider whenever examining this concept, namely:
- who owns the data?
- who has the right to use the data?
- under what conditions can other service providers use the data?
- can the user freely use the data?
Notably, the EESC maintains that the original health data of each user “must be regarded as an original product generated by [that user]” which merits the protections of intellectual property law. Here, the Opinion calls for a “right to free copying” of data generated on digital health platforms, which can then be reused and re-aggregated in other services and algorithms as the individual may see fit. The Opinion argues that such a right would not only enable people to take back their digital identity, but also create a more robust freedom of choice in the marketplace of digital health platforms that would spur competitive innovation. It will certainly be interesting to see how (and whether) this concept of one’s health data as an “original product” will evolve over time.
The Opinion closes by considering the challenges and opportunities that await on the horizon of digital health transformation. These include not only the great promise of enabling technologies (such as 5G) and the possibility to rebalance the “socioeconomic asymmetries” of a data-sharing economy, but also the ethical issues of data mining and automated decision-making, as well as the ever-present risks of cybersecurity threats.