HealthData@EU Pilot

🔊 Listen to the podcast from BBMRI-ERIC's recent workshop on transparency in the #secondaryuse of #healthdata, part of the HealthData@EU Pilot! Discover why patient organizations, experts, and policymakers play a crucial role in shaping the #EHDS. Tune in here: https://lnkd.in/dbiM6ywG #HealthData #DigitalHealth #EHDS #HealthDataEU

Join us at the HealthData@EU Pilot Project Stakeholder Forum 2024, taking place during the pre-conference day of the 17th Edition of the EPH Conference. This event will dive into #EHDS and its potential for advancing #secondaryuse of #healthdata across Europe, with insights from the HealthData@EU Pilot. 📅 Date: November 12, 2024 📍 Location: Lisbon, Portugal 🕐 Time: 13:30 - 17:00 Event Highlights: ➔ Updates on cross-border health data discovery and access improvements ➔ New standard processes designed to simplify data sharing across Europe ➔ Practical strategies for preparing #healthdata to ensure usability and compliance ➔ Scalable solutions for expanding EHDS access in the future 📢 EPH conference website > https://lnkd.in/epsdCSwv 📝 Full agenda > HealthData@EU pilot Preconference Programme 🔗 Register > https://lnkd.in/dgghJcWD #EHDS #HealthDataEU #EUHealth #HealthData #secondaryuse #TEHDAS2 EPH Conference Sciensano EUPHA - European Public Health Association Health Data Hub

I was glad to take part in HealthData@EU Pilot's General Assembly last week and dive into the opportunities and challenges of the European Health Data Space (#EHDS) legislation. I'm excited to start working on the follow-up project TEHDAS2 Joint action to help shape the future of the EHDS with my new colleagues at Sitra and partners from across Europe. Are you working with #healthdata? Visit tehdas.eu to learn more and follow TEHDAS2 Joint action here on LinkedIn for updates!

The European Health Data Space (EHDS) act represents a incredible opportunity for health data science But it needs to be implemented with care In a NatureMedicine commentary we discuss the present and future of EHDS This is the result of a workshop with some incredible researchers across EU countries and disciplines Read the article here https://rdcu.be/dTKUj and please reach out if you have questions/comments #EHDS

I was delighted to take part in an insightful 𝐖𝐨𝐫𝐤𝐬𝐡𝐨𝐩 𝐨𝐧 𝐈𝐧𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐨𝐧 𝐏𝐨𝐢𝐧𝐭𝐬 𝐟𝐨𝐫 𝐂𝐢𝐭𝐢𝐳𝐞𝐧𝐬 𝐮𝐧𝐝𝐞𝐫 𝐭𝐡𝐞 #𝐄𝐇𝐃𝐒 in Brussels brought together by colleagues at BBMRI-ERIC in collaboration with HealthData@EU Pilot and TEHDAS2 Joint action In attendance were a number of (forthcoming) Health Data Access Bodies #HDUBs, who will prospectively not only have to enable and manage access to health data for secondary use but will also be entrusted with the task of communicating with stakeholders and addressing public trust issues related to #healthdata sharing. I found the multilayered communications approach in the context of HDP4Germany by Bundesinstitut für Arzneimittel und Medizinprodukte’s Rebecca Alvarado particularly compelling: ✅ Discern how secondary data use brings real benefits to citizens and society ✅Understand how to translate those benefits to patients and citizens in a simple, comprehensive way. Preferably without using the term ‘secondary data’ and carefully tailored to different segments of the population ✅Prepare for addressing potential misinformation and disinformation by negative campaigns. When responding to data skepticism, instead of focusing on the ‘what’, think about ‘why’ mistrust in the data sharing framework and ‘how’ to effectively communicate by taking into account people’s past experiences and the root of their concerns In a nutshell, clear, transparent communication is essential for building #trust and involvement. And trust in the EHDS will translate into more representative and higher-quality data that is usable and promises better #health and #care outcomes. 🩺🤝 How do you see your Member State communicate about health data sharing and do you think it is well understood by the public? What are the typical concerns raised, and do you think that data holders and data users are proactively engaged in supporting more effective communication with data subjects (i.e., patients)? As always, interested in your thoughts and perspectives. #healthdata #stakeholderengagement #datatransparency #healthinnovation

🌟 𝐑𝐞𝐟𝐥𝐞𝐜𝐭𝐢𝐧𝐠 𝐨𝐧 𝐭𝐡𝐞 𝐥𝐚𝐬𝐭 𝐭𝐰𝐨 𝐝𝐚𝐲𝐬 𝐚𝐭 𝐭𝐡𝐞 “𝐖𝐨𝐫𝐤𝐬𝐡𝐨𝐩 𝐨𝐧 𝐈𝐧𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐨𝐧 𝐏𝐨𝐢𝐧𝐭𝐬 𝐟𝐨𝐫 𝐂𝐢𝐭𝐢𝐳𝐞𝐧𝐬 𝐮𝐧𝐝𝐞𝐫 𝐭𝐡𝐞 𝐄𝐇𝐃𝐒” 🌟 Irene Schlünder, Michaela Th. Mayrhofer, PhD and Verena Borecky from BBMRI-ERIC organized an insightful workshop where we explored the pivotal role of citizen engagement in health data sharing for research under the future EHDS regulation. The workshop, co-funded by the EU4Health Programme, highlighted both the successes and challenges in effectively communicating with citizens about health data use. This was especially relevant for our work from Gesundheit Österreich GmbH in TEHDAS2 Joint action (WP8 “Serving Citizens”) and HealthData@AT! 🔍 Key takeaways from Day 1: ▪️ Be EPIC in communication: Audra Diers-Lawson (Kristiania University College) shared the EPIC (Engaged, Positive, Informative, Communication) framework, stressing the importance of both good visuals and well-crafted text to mitigate communication risks. ▪️ Lessons from ELGA: Franz Leisch’s presentation on Austria’s Electronic Health Record showcased the complexities of managing negative campaigns and the importance of stakeholder involvement. ▪️ Citizen Portals: Inspiring presentations by Yacine Daquin (Health Data Hub), Antti-Juhani Piirainen (Findata – Sosiaali- ja terveysalan tietolupaviranomainen | Social and Health Data Permit Authority), Wiebke Lesch & Sophie Elise H. (TMF Technologie- und Methodenplattform für die vernetzte medizinische Forschung e. V., Medizininformatik-Initiative (MII)), Liis Leitsalu, Regina Becker (LNDS) and Aneta Tyszkiewicz (EFPIA - European Federation of Pharmaceutical Industries and Associations) revealed the value of transparency, centralized information, and the role of patient advisory boards in building trust. 🎯 Highlights from Day 2: ▪️ Multi-layered communication: Rebecca A. (Bundesinstitut für Arzneimittel und Medizinprodukte) emphasized the importance of tailoring messages to different demographics and using multiple channels to reach diverse audiences. ▪️ Feedback from patient organizations: Gozde Susuzlu Briggs (Data Saves Lives Initiative), Jelena Malinina (EURORDIS-Rare Diseases Europe) and Sara Roda (Standing Committee of European Doctors (CPME)) discussed the need for empowering patients, especially those living with rare diseases, while also ensuring their protection in the data-sharing process. ▪️ Building trust: Mélodie Bernaux from the European Commission highlighted the need for transparency and best practices in fostering citizen trust in health data reuse. 💡 Looking forward to seeing how these discussions shape the implementation of the EHDS regulation and enhance citizen involvement in health data sharing! Claudia Habl Lorenz Dolanski-Aghamanoukjan HealthData@EU Pilot #EHDS #HealthData #CitizenEngagement #Transparency #DataSharing #HealthInnovation #Communication

The HealthDCAT Application Profile designed in the frame of the EDHS2 pilot project https://ehds2pilot.eu/ has been published https://lnkd.in/di5b7igR paving the way to the healthData@EU data space.

𝗧𝗵𝗲 𝗻𝗲𝘄 𝗤𝗨𝗔𝗡𝗧𝗨𝗠 𝘄𝗲𝗯𝘀𝗶𝘁𝗲 𝗶𝘀 𝗹𝗶𝘃𝗲! Visit 🔗quantumproject.eu and get to know more about the data quality and utility label:  ✅ QUANTUM is a #HorizonEurope project with 35 European partners  ✅ QUANTUM will contribute to Article 56 of the #EHDS ✅ QUANTUM aims to develop a common label system to ensure the quality of datasets for scientific and health innovation for the HealthData@EU Pilot 𝗪𝗮𝗻𝘁 𝘁𝗼 𝗸𝗻𝗼𝘄 𝗺𝗼𝗿𝗲?   Discover the latest updates on our research outputs, activities, news, events, opportunities and how to get involved with the project. 👉 Check out the website: https://quantumproject.eu. Project Consortium: Sciensano | Health Data Hub | The European Institute for Innovation Through Health Data | Università Cattolica del Sacro Cuore | BBMRI-ERIC | DIGITALEUROPE | Gesundheit Österreich GmbH | Universitat Politècnica de València (UPV) | Health-RI | European University Hospital Alliance (EUHA) | Greater Paris University Hospitals - AP-HP | VIB | Croatian Institute of Public Health (Hrvatski zavod za javno zdravstvo - HZJZ) | HUS Helsingin yliopistollinen sairaala | Finnish Institute for Health and Welfare (THL) | ECRIN (European Clinical Research Infrastructure Network) | Bundesinstitut für Arzneimittel und Medizinprodukte | HIQA - Health Information and Quality Authority | Istituto Superiore di Sanità | CESSDA ERIC | Universidade do Porto | SPMS, EPE - Serviços Partilhados do Ministério da Saúde | Nacionalni inštitut za javno zdravje NIJZ | Erasmus MC | Health Data Research UK (HDR UK) | University of Essex | INSERM | European Health and Digital Executive Agency (HaDEA)

🚀 Today marked the kick-off meeting for #TEHDAS2, coordinated by Sitra! This project follows the completion of the first Joint Action "Towards a European Health Data Space" last July. That initial phase provided essential guidelines and inputs to the European Commission for preparing the #EHDS proposal. Now, TEHDAS2 is taking the next step to prepare for the implementation of the #EHDS and provide technical specifications for data holders, future Health Data Access Bodies, and data users. It unites the 27 Member States of the #EuropeanUnion, along with Norway, Iceland, and Ukraine. The HealthData@EU Pilot results will serve as a robust foundation for this crucial work. We look forward to our collaboration! 💪 Markus Kalliola Elina Drakvik Sofia Marin #HealthData #EUHealth #EHDS #secondaryuse

Radical Health Festival Helsinki has started and this year a big topic is the upcoming European Health Data Space (EHDS). The panelists covered many important aspects of the EHDS: Eugenia Rinaldi stated a crucial fact: Data quality is important at all stages of data life cycle. Poor data quality leads to poor results. Henrique Martins stressed the importance of the fitness for purpose of the electronic health record systems. Markus Kalliola pointed out that we should not take the EHDS as written in stone. If we feel that something is not working well, we should try to fix it, while also being flexible and adapting to the new environment. Isabelle Zablit-Schmitz highlighted how the processes of accessing health data will undergo a radical change, as the future will bring a single access point for data from multiple countries. An initial investment is needed but the EHDS is expected to bring significant monetary benefits later. Among the investments are improving the digital skills of health professionals and patients using the digital platforms, raised Martin Dorazil. Prevention costs the EU much less than cure. “1 g of prevention is equivalent to 100 g of cure”, as Christos Schizas put it. Petra Wilson summarized the aim of the EHDS: to save lives and money. #EHDS #EuropeanUnion #HealthUnion #HealthData