The eBRAIN-Health Public and Patient Advisory Group meets online for a consultation


On 6 May, the members of the eBRAIN-Health Public and Patient Advisory Group met online. They were joined by Daphné Lamirel (Public Involvement Officer at Alzheimer Europe), Dianne Gove (Director for Public Involvement and Ethics at Alzheimer Europe), Sarah Campill (Public Involvement Officer at Alzheimer Europe) and Klaudia Kwiatkowska (Research Associate at the Department of Innovation and Digitilisation in Law at the University of Vienna). The meeting kicked off with a presentation by Daphné about the recently agreed-upon proposal of the European Health Data Space (EHDS). The EHDS is a proposal from the European Union to create a system through which information/data about people’s health can be accessed more easily, by patients/ individuals, different types of health practitioners (e.g. GPs, specialist doctors) and researchers/organisations conducting research across all countries in the European Union.

 Klaudia and Daphné then facilitated a consultation, where members were invited to provide their views on this new proposal. In particular, they discussed issues related to the opt-out system of the EHDS. Drawing from examples of other opt-in and opt-out systems (e.g. the EU GDPR or organ donation in the UK), they provided their opinions on the advantages and drawbacks of such a system. Discussions also focused on the types of data that might be shared and accessed via the EHDS for research purposes. Lastly, members gave their views on the exception to the EHDS proposed legislation. The latter specifies that individuals may not be able to opt-out from primary and secondary use of data under the EHDS where the data is used for purposes ‘of the public interest’, among others. The conversations were very engaging, with all members contributing actively and sharing their diverse opinions and experiences. The feedback will be used in the context of Public Involvement activities in the eBRAIN-Health project, and to inform the legal and ethics work carried out by Alzheimer Europe and the University of Vienna on the EHDS.