We arrived at the end of the user journey... actually not really: Indeed, once data have been accessed and analysed, the process doesn’t end with the research output — it ends with sharing the outcome for public benefit. This is why we also shared tips on how to better communicate on your research.

The final step of the #EHDS user journey is the publication of the results/outputs, which is an​ obligation, aiming to insure transparency towards citizens, and to improve trust and data solidarity. This aspect was presente by Charlotte Mattelé, from the Belgian Ministry of Health.

Then, Todor Kondić, from the Luxembourg National Data Service, presented the data provision's step of the #EHDS user journey. He also explained what a Secure Processing Environment is, and how it ensures the confidentiality of the #healthdata during provisioning, analysis and the results exports.

While pseudonimisation replace an unique identifier by a pseudonym, and is reversible, anonymisation aims to delete any identifiable information.
Minimisation means that "personal data must be adequate, relevant and limited to what is necessary for the purposes for which they are processed".​

Along the data user journey another important step is the data preparation, which aims to reduce the risk of re-identification of a natural person, through pseudonimisation, anonymisation, and minimisation principles. This was presented by Justin Ansotte from the Belgian Health Data Agency. #EPH2025

Then Pinar Alper, from the Luxembourg National Data Service, presented the important next step of the #EHDS user journey: the permit application, and how this would work under the new European Health Data Space regulation. #EPH2025

Data discovery is the first step of the user journey. @nienkeschutte.bsky.social outlined the importance of #HealdhDCATAP, the new common #metadata model for #healthdata, while Alexander Degelsegger (@goeg.at) dived into the Data catalogue as the fundamental tool for data discovery. #EPH2025

Our head of unit @nienkeschutte.bsky.social then introduced the #EHDS user journey.
1. Data discovery (find data in metadata catalogues)
2. Data access request
3. Data preparation
4. Use of data (analysis in a secured processing environment)
5. Finalisation (export, and publication of the results)

Elina Drakvik, project manager of the @tehdas.eu Joint Action, explained how the #EHDS regulation will make #healthdata findable and accessible for research, innovation, policy-making and regulation — safely and securely. #EPH2025

🇧🇪 Belgian stakeholders: join our webinar with the Belgian Health Data Agency and Federal Public Service Public Health.
🗓️ Practical guidance for the #EHDS consultation
📅 16 Oct, 15:30–17:30
🔗https://sciensano.webex.com/weblink/register/r93a299d550c7707f85464cac6af825d7

At @sciensano.be we promote an inclusive approach where citizens, researchers, data holders and regulators all contribute to building trust in Europe’s health data ecosystem.

These documents will guide how #healthdata are accessed, shared and reused securely across Europe — for research, policymaking, innovation and public health.
Topics include:
• fees and penalties
• data access procedures
• anonymisation
• secure environments
• opt-out mechanisms

And more good news: yesterday, the European Commission's DG SANTE presented Release 5 of the healthDATA@EU central platform, the EU platform for secure cross-border access to #healthdata for research, innovation and policy-making: acceptance.data.health.europa.eu?locale=en

In this project, @sciensano.be is leading the work package 3, which focuses on identifying and mapping the tools, services, and resources required by Health Data Access Bodies (HDABs) to support the development and deployment of AI as medical devices.
shaiped.eu/project/#wp3 #EHDS