Consumer attitudes to health data sharing

Everything related to our health, such as the latest ailments we had, our medical prescriptions, or our blood pressure says something about the state of our bodies and minds. This data is undoubtedly of great value to ourselves and to healthcare professionals, but it can also help researchers, public health authorities, governments, and drug developers and different types of industries.

In light of the Commission’s proposal, nine consumer organisations from eight EU countries have surveyed people to get a better insight on what they think. This survey sheds light on consumer attitudes and unveils what type of data they are willing to share, with whom and for what purpose. The three purposes that consumers were surveyed on regarding sharing their health data were for provision of healthcare, for scientific research, or for public health reasons
(for example, contraction of infectious diseases or vaccination status).

This report provides an overview of the key results of the survey, followed by their assessment and BEUC’s policy recommendations, while an explanation of the methodology behind the survey can be found at the end of the report.

The Executive Summary is available here.