Innovation in Health Information System unit

Our colleague Claudio spoke at a webinar by the European Burden of Disease Network, highlighting why the quality and utility of #healthdata must be assessed. He presented the @quantumproject.bsky.social data quality and utility labelling tool.
🔗 www.burden-eu.net/activities/w...

📬 SHAIPED newsletter #3 is out!
Discover how our team contributes to advancing #AI as a medical device, supporting secure, efficient and regulation-compliant data pathways within the European Health Data Space #EHDS.
👉 mcusercontent.com/aca6400104f6...

📣 PUBLIC CONSULTATION — Have your say on the secondary use of health data and the European Health Data Space #EHDS.
📑 @tehdas.eu seeks feedback on 11 draft guidelines covering fees, penalties, data access, data protection and citizens’ rights.
More info 👉 tehdas.eu/public-consu...

🧐 In the context of the BePIN (Belgian Pandemic Intelligence Network) project, we have examined how scientific evidence informed decision making during the #COVID19 crisis in Belgium and beyond.
📑 This was presented in a great poster by our colleague Miriam Saso at #EPH2025. ⬇️

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

Great start to the European Public Health Conference in Helsinki 🇫🇮 with a preconference session on the #EHDS, co-organised with @sciensano.be, the Belgian Health Data Agency, Belgian Federal Public Service, Austrian Public Health Institute, Luxembourg National Data Service and @tehdas.eu. #EPH2025

Discover our latest findings from Iceland 🇮🇸 on digital systems for health threat detection and response, supporting interoperability with the EU Health Emergency Preparedness and Response Authority (HERA).
👉 zenodo.org/records/1752...

🙂 Meet our team today and tomorrow at the #SNOMEDCTExpo 2025, in Antwerp!
We are at the European Projects Pavilion, representing the Joint Action @tehdas.eu. The @quantumproject.bsky.social is there — a project we’re proud to contribute to as well!
🔗 www.snomed.org/snomedct-expo

🇧🇪 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

🇪🇺 The European Health Data Space (#EHDS) is taking shape.
🗣️ Have your say!
Under the lead of @sciensano.be, the @tehdas.eu joint action has opened a public consultation (30 Sept–30 Nov 2025) on 11 draft guidelines and technical specifications.
➡️ tehdas.eu/public-consu...

👉 Guideline on dataset description duties in the European Health Data Space #EHDS published!
🔗 tehdas.eu/wp-content/u...

We developed it for @tehdas.eu, offering support for #healthdata holders who will need to describe and make datasets available for secondary use under the #EHDS Regulation.

📢 🇧🇪 Invitation to Belgian stakeholders!

🇪🇺 The European Health Data Space is taking shape.
Join us on 16 Oct (15:30–17:30) for a briefing: Practical guidance for the #EHDS consultation. Discover @tehdas.eu draft guidelines & prepare your input.

👉 Register here! sciensano.webex.com/weblink/regi...

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

🇪🇺 Big step for the European Health Data Space #EHDS!
HealthDCAT-AP, the metadata standard developed by our @sciensano.be unit & partners, has been transferred to the European Commission @ec.europa.eu to ensure its long-term maintenance.
👉 healthdataeu.pages.code.europa.eu/healthdcat-a...

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

📨 The first newsletter of the project SHAIPED is out!
Your gateway to updates from one of Europe’s flagship initiatives at the intersection of #healthdata governance, #AI regulation, and medical innovation!
👉 mailchi.mp/73c46986de93...

🧩 Last week at @ulbruxelles.bsky.social, BE-PIN partners met to connect researchers, policymakers, experts in pandemic preparedness, to rethink how we deal with future health crises.
@sciensano.be backs co-creation & data-driven action for stronger future responses.
👉 www.pandemicintelligence.be

Earlier this month, we were glad to join the PREPARE-EU Spring School, hosted by KULeuven, to connect on #pandemicpreparedness and research.
Our colleagues Miriam Saso & Shona Cosgrove presented their poster on building resilient intelligence networks in 🇪🇺, based on our work in the BE-PIN project.

The xShare yellow button is meant to provide citizens with a simple tool which will provide the right not only to access but also to “act on” their own data.
👉 Learn more: xshare-project.eu

ℹ️ The EU funded xShare project is designed to prepare the concrete implementation of the European Health Data Space (#EHDS), exploring use cases which can “activate” the European Electronic Health Record formats (EEHRxF).