TEHDAS2 is a joint action which supports implementation of the European Health Data Space (EHDS) in its focus on the secondary use of health data in the European Union. The joint action reinforces the implementation of the European Health Data Space (EHDS). It seeks to attract public feedback on the guidelines it drafts, then uses the observations and inputs it receives to refine its publications. The eventual documents – like guidelines – are intended to offer solid guidance to EHDS implementers e.g., health data access boards on how to put different components of the data space in place.
This third wave is all about data enrichment and informing citizens about the secondary use of health data.
Seven consultations are on offer
In the third wave of consultations, seven consultations are running in parallel. They cover very specific topics relevant to the secondary use of health data, like collaboration, catalogue navigation, data enrichment, handling research outcomes, the linkage of health datasets, and the transfer of electronic health data. Each consultation is based around a questionnaire/survey.
Here is a description of just one of them – on Citizen Information Points.
Citizen information points are related to the content of Article 58 of the EHDS Regulation on the obligations of health data access bodies towards natural persons. Information points are associated with the responsibilities of individual member states’ health data access boards, including making information publicly available on how health data is made available for secondary use. The draft TEHDAS2 guidelines describe the points as being intended for natural persons, including individuals. The information points need to be easily and digitally accessible, offered in a country’s national language(s) and in English, easy to understand, and address key issues about secondary health data use.
In this specific questionnaire, around 20 dedicated questions relate to subjects which cover citizen information points as well as the clarity and feasibility of application of the eventual (TEHDAS2) guidelines.
Before answering any of the consultations surveys, e.g., on the citizen information points and Article 58, it is clearly helpful to read the relevant article in the EHDS Regulation and the draft guidelines.
All the questionnaires start with 10 or so common questions about respondents’ sector and organisation background.
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