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Session 1 | Keynote Speech: Citizens’ rights of access and transmission of personal health data: Implementation models and approaches

Dipak Kalra of I~HD gave the Symposium’s open (keynote) speech. The European Health Data Space is the flagship proposal from the European Commission that will ensure that every citizen has certain rights: they will be able to access their complete and accurate health data, authorise its use for safer cross-border care, and be assured about the trustworthiness of the electronic health record systems which process and communicate their data. The proposal for the space also defines the governance rules for making health data more widely available for multiple uses such as personalised medicine, Artificial Intelligence algorithms training, strategic planningdecision making, and research at a European scale. The data space initiative has been broadly welcomed. Some parts of it, however, need more in-depth preparation while its timelines are also ambitious. The “implementing legislation” of the data space is therefore likely to follow in 2023.


🗣️ Discussion: Enquiries from members of the audience followed. They pertained to any proposed plans for the pseudonymisation of data and synthesisation of data, and the directions that could be taken with privacy-enhancing technologies. The keynote speaker encouraged people to contact EHTEL/him with their own examples of how not to handle health and care data.

Isabelle de Zegher (b!loba, a health data-sharing solution) made two specific comments on the session. First, she would like to discuss how data intermediaries can meet the needs of public health authorities and, second, she raised the challenges of “data portability”. Purely as an example, she talked of the challenging experience of recently having had  herself to download large volumes of personal health data in .pdf format. (Hence, her remarks can be associated with the approaches outlined, from Denmark, in the Symposium’s second session.)

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