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European Cancer Organisation response to the EU Data Act Consultation (September 2021)

03 March 2022

In the early Autumn of 2021, the European Commission completed a consultation ahead of publishing a new EU Data Act for consideration. This Act will propose new rules on who can use and access data generated in the EU across all economic sectors. Its intention is to ensure fairness in the digital environment, stimulate a competitive data market, open opportunities for data-driven innovation and make data more accessible for all. More information here.

The European Cancer Organisation (ECO), supported by its Digital Health Network, provided a response to the consultation, focusing on data portability. Main points of response included: 

  • A strongly expressed view that data portability rights are essential for patient care, mainly in the framework of cross-border healthcare 
  • However, to achieve this right, the barriers to data portability must still be overcome. These barriers include: 

- Lack of common standards and tools to access data; 
- Lack of a centralised dashboard for monitoring and controlling the flow of data; 
- Lack of technical possibilities to import data; 
- Lack of interoperability of data systems 

  • Therefore, the European Cancer Organisation identifies a need for more guidance and rules on the concrete implementation of data portability. 
  • Recommendations from the European Cancer Organisation in this respect include: 

- Further defining in legislation which data is subject to data portability without violating privacy rights; 
- Defining a mandatory electronic format for data portability; 
- Creating a greater sense of obligation for controllers to ensure that data is easily transferable; 
- EU level guidance, recommendations and code of conduct/certification schemes could be helpful in this respect; 
- To underpin trust and safety, ECO also suggested the creation of certification schemes and standard procedures for security, data ethics and data governance for promoting data portability in the best interest of the patients. 

The European Cancer Organisation considers that interoperability is a prerequisite to data portability. The European Cancer Organisation therefore recommends the establishment of EU level political targets and benchmarks for data interoperability, supported and acted upon by Member States. 

Finally, the European Cancer Organisation reminded the European Commission of the concerns within the European Cancer community on applications of GDPR. ECO recommends further harmonisation of GDPR implementation across the European Union through specific codes of conduct and certification schemes. 

See the full response here. 

A summary report of the consultation exercise is also available here.