Sharing of health data: the EU called upon to be more demanding with private data

Sharing medical results via a platform, making appointments, downloading prescriptions online… The services rendered or to come, via a digital safe like “My health space” can really make our lives easier. But the future extensions, particularly at European level, are worrying consumer associations.

Legislation too permissive in the state?

A European legislative proposal provides for the construction of a “European health data space”, which would allow each European to share his medical data with his caregivers wherever he is in the EU. An understandable decision in the current context, but which particularly attracts the attention of the UFC Que Choisir and seven other member organizations of the European Bureau of Consumer Associations (Beuc).

They fear in particular “too permissive” legislation because the consent requested would be too implicit: the consumer can oppose the cross-border sharing of his data… only if he ticks the right box. In view of these risks, they consider it necessary for Europeans to give “explicit consent”.

7 out of 10 consumers opposed to cross-border sharing

To support their point, the associations are making public a survey conducted on the expectations of French consumers regarding the use and sharing of their health data. We learn in particular that 90% of respondents are opposed to transmitting sensitive data (such as sexual and reproductive health), and that 66% are now unwilling to share their data across borders.

Apart from the fear of having sensitive data leaked, consumers also do not seem comfortable with their data being used for profit. Thus, two out of three consumers are opposed to the use of their data by third parties, 92% of them express such reluctance if the applicant is an insurance company, for example.

Move towards a much stricter sharing model

Anxious to guarantee consumers the protection of their health data, UFC-Que Choisir and BEUC are therefore asking European legislators to implement several measures as a matter of urgency:

• Provide that consumers give their explicit consent before their personal electronic health data is used for their own medical care in the European Union;
• Guarantee that consumers are better protected with regard to the use of their health data for secondary purposes, in particular commercial ones. It needs :
  • The requirement of explicit and informed consent before any sharing with third parties;
  • Exclusion from the scope of genetic data, and personal data generated by wellness and digital health applications;
  • The restriction of grounds allowing access to data for secondary use, which is currently too extensive.