Today, the European Consumer Organization BEUC published a survey on consumer behavior and attitudes towards sharing their health data. The results show that consumers are generally more cautious about sharing their health data than what the EU legislation currently under discussion proposes.
This survey was conducted across eight European countries and is aiming to create a European Health Data Space in May 2022. The objective is to record people’s health data systematically so that healthcare professionals and patients can access it, while also genetic and clinical trials’ data that go beyond electronic health records, can become available for research, innovation, policy-making and regulatory activities.
These are the major findings:
- The majority of people surveyed are already using health platforms, ranging from the highest rate of use in France (96 percent) to the lowest in Germany (70 percent).
- However, people are very selective about the kind of health data they want to share: 61 percent are willing to share their health status (such as allergies) for care purposes, while a large majority does not want to share data related to their health habits (67–70 percent depending on the purpose), genetic data (77–80 percent) or sexual and reproductive health data (85–87 percent).
- Consumer willingness to share their health data with an entity strongly mirrors the level of trust they place in them: 88 percent are willing to share their data with their general practitioners (88 percent), but only 8 percent are willing to share their data with insurance or wellness apps companies. Only 5 percent are willing to share their health data with digital technology companies.
Monique Goyens, Director General of the European Consumer Organization BEUC, noted: “These survey results should provide a reality check to the EU. While the European Health Data Space is well-intentioned, setting it up should not come at the detriment of people’s protection and preferences regarding how much they want to share, with whom and for what purpose. Health data is incredibly sensitive and our survey shows people do not want to share it all or share it out blindly. People are generally happy to share their data with their doctors but not with tech or insurance companies. There are also clear differences in the type of data people are willing to share. For example, they are clearly uncomfortable sharing health habits, genetic data or sexual and reproductive health data. It is therefore crucial that EU decision-makers integrate the right protections in the legislation so that consumers are better protected and their health data is not misused. That includes an opt-in mechanism for patients to share their data for care purposes. There should also be at the very least an opt-out one for sharing their data for scientific or public health purposes, and some data exclusions and purpose restrictions. That is how to build trust in this health data space."
Source: BEUC
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