The European Commission wants to keep up the pace and tempo on moving towards an operational European Data Space.
EHTEL is following closely the roadmap established by the Commission in its European Data (and Artificial Intelligence) Strategy released in February 2020. Thanks to the active participation of numerous EHTEL members, consolidated feedback was provided to the Commission on the strategy.
Its ideas enriched by all the feedback it received, the Commission released two new proposals which were open for comment until 3 February 2021.
The first proposal was related to data governance in general. It focuses on the secondary use of sensitive data held by the public sector (i.e., a one-stop shop), the mandatory authorisation mechanism for data donation (altruism), the legal setting up of a Data Governance Board, and the creation of a voluntary labelling framework for data intermediaries. The accompanying impact assessment welcomes the whole initiative, but calls for strong complementary work to make the initiative truly operational.
The second proposal was healthcare-specific. It provides the first step towards the creation of a “European Health Data Space” scheduled for the end of 2021. Although quite general, the paper considers that current cooperation mechanisms are unable to support the European data strategy, and it thus proposes to reshape them thoroughly.
Submissions on proposals were received from many not-for-profit associations and stakeholder representative organisations, working either at a European or a country-specific level, and numerous industrial players ranging from large-scale international to smaller companies.
OPEN DEI’s healthcare cluster welcomes the Digital Governance Act, and its focus on data intermediaries; data altruism; and data subject’s consent for areas of general interest/scientific research. It highlighted, however, more than six areas that need more detailed analysis, clarity, and guidance. It emphasised the need for concrete examples of work done on health data governance: its own example came from in Catalunya, Spain.
EHTEL is also an official member of the eHealth Stakeholder Group. The group provides yet another channel to convey messages and feedback to the Commission on a number of topics related to digital health and data. Together with EHTEL member, TIC Salut Social of Spain, on 29 January 2021 EHTEL attended an official webinar dedicated to the evaluation, assessment and quality of mHealth applications.
As a result, the EHTEL community is in a good position to give inputs to these important European consultations and to offer feedback through a variety of channels. Keep your eyes open, with us, on all these crucial developments as they move forward through the policy process and begin to be applied. See the “Resources” below.