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🇪🇺🏥 THE EUROPEAN HEALTH DATA SPACE: REVOLUTIONIZING DATA SHARING AND USE The European Health Data Space is set to transform healthcare across the EU, enabling seamless data sharing while giving individuals control over their health data. This groundbreaking initiative will create new opportunities for healthcare providers, researchers, and innovators to access and utilize health data responsibly, accelerating medical advancements and improving patient outcomes.  Check out our article to discover how the European Health Data Space will reshape the future of healthcare.  #ErisLaw #EHDS #Healthcare #Innovation #EUHealthcare #DigitalHealth #IT_Tech #Sweden #Stockholm

The European Health Data Space (EHDS) is a game-changer for healthcare in the EU, enabling seamless data sharing and giving individuals control over their health data. 🚀 🌟 This initiative opens up new opportunities for healthcare providers, researchers, and innovators to responsibly access and use health data, accelerating medical breakthroughs and improving patient outcomes. 📢 Don’t miss out! Discover how EHDS will reshape healthcare. Whether you're in the industry or just curious about digital health, this is a must-read. 👉 Check out our article and join the conversation! #ErisLaw #EHDS #Healthcare #Innovation #EUHealthcare #DigitalHealth #IT_Tech #Sweden #Stockholm

This study suggests that certain forms of health data reuse—namely transnational data sharing, commercial involvement, and use of data as national economic assets—risk undermining public support for health data reuse.

Yesterday, we hosted ‘Unlocking the Power of Data: Understanding the European Health Data Space from Regulation to reality’, a policy event with select stakeholders from across the healthcare spectrum to discuss the European Health Data Space Regulation and its implementation. During the event, run by our experts Petra Wilson, Angela Velkova and Adam Day, stakeholders reflected on what was needed to enable an EHDS to deliver on its promise, and urged policy makers to consult widely when developing the foreseen secondary legislation. More from our experts on the subject in this article: https://bit.ly/4870mej #EHDS #Data #HealthData

🚫 𝘛𝘩𝘦 European Health Data Space “𝘌𝘏𝘋𝘚 𝘪𝘴 (…) 𝘪𝘴 𝘣𝘰𝘶𝘯𝘥 𝘵𝘰 𝘥𝘦𝘵𝘳𝘢𝘤𝘵 𝘧𝘳𝘰𝘮, 𝘳𝘢𝘵𝘩𝘦𝘳 𝘵𝘩𝘢𝘯 𝘢𝘤𝘩𝘪𝘦𝘷𝘦, 𝘪𝘵𝘴 𝘢𝘮𝘣𝘪𝘵𝘪𝘰𝘶𝘴 𝘴𝘵𝘢𝘵𝘦𝘥 𝘢𝘪𝘮𝘴 𝘰𝘧 (…) 𝘨𝘦𝘯𝘦𝘳𝘢𝘵𝘪𝘯𝘨 𝘱𝘶𝘣𝘭𝘪𝘤 𝘷𝘢𝘭𝘶𝘦 𝘵𝘩𝘳𝘰𝘶𝘨𝘩 𝘩𝘦𝘢𝘭𝘵𝘩 𝘥𝘢𝘵𝘢 𝘴𝘩𝘢𝘳𝘪𝘯𝘨”. 🚫 𝑴𝒆𝒅𝑫𝒂𝒕𝒂 𝑴𝒐𝒏𝒅𝒂𝒚 0️⃣ 6️⃣ This is the summary of a group from public health, politics, social sciences, law and ethics met for a workshop at KU Leuven to discuss the objectives and, above all, the implementation problems of the EHDS.   The goals of the EHDS are: ·     to grant citizens increased access to and control of their (electronic) health data across the EU, and ·     to facilitate health data re-use for research, innovation, and policymaking --> and setting a novel standard for the rest of the world!    Without joint cooperation, we will not make any progress in our healthcare system. Even if there is already criticism: 𝐁𝐮𝐭 𝐛𝐞 𝐬𝐮𝐫𝐞 𝐭𝐨 𝐫𝐞𝐚𝐝 𝐭𝐨 𝐭𝐡𝐞 𝐞𝐧𝐝 𝐭𝐨 𝐡𝐞𝐚𝐫 𝐟𝐫𝐨𝐦 𝐆𝐞𝐧𝐨𝐯𝐞𝐬𝐞 𝐞𝐭 𝐚𝐥. (2022) 𝐰𝐡𝐲 𝐢𝐭'𝐬 𝐰𝐨𝐫𝐭𝐡 𝐩𝐮𝐭𝐭𝐢𝐧𝐠 𝐚 𝐥𝐨𝐭 𝐨𝐟 𝐰𝐨𝐫𝐤 𝐚𝐧𝐝 𝐫𝐞𝐬𝐨𝐮𝐫𝐜𝐞𝐬 𝐢𝐧𝐭𝐨 𝐢𝐭! 𝐓𝐡𝐞 𝐜𝐫𝐢𝐭𝐢𝐜𝐢𝐬𝐦 𝐨𝐟 𝐭𝐡𝐞 𝐠𝐫𝐨𝐮𝐩 𝐟𝐫𝐨𝐦 𝐊𝐔 𝐋𝐞𝐮𝐯𝐞𝐧 𝐢𝐬 𝐭𝐡𝐚𝐭 𝐭𝐡𝐞 𝐜𝐮𝐫𝐫𝐞𝐧𝐭 𝐄𝐇𝐃𝐒 𝐏𝐫𝐨𝐩𝐨𝐬𝐚𝐥… 𝐈𝐬 𝐮𝐧𝐝𝐞𝐫𝐦𝐢𝐧𝐢𝐧𝐠 𝐫𝐚𝐭𝐡𝐞𝐫 𝐭𝐡𝐚𝐧 𝐞𝐧𝐡𝐚𝐧𝐜𝐢𝐧𝐠 𝐩𝐚𝐭𝐢𝐞𝐧𝐭 𝐜𝐨𝐧𝐭𝐫𝐨𝐥 𝐨𝐯𝐞𝐫 𝐝𝐚𝐭𝐚  ·     Patients will only have limited access to information about who is processing their data and for what purposes, which restricts their ability to control their information 𝐈𝐬 𝐡𝐢𝐧𝐝𝐞𝐫𝐢𝐧𝐠 𝐫𝐚𝐭𝐡𝐞𝐫 𝐭𝐡𝐚𝐧 𝐟𝐚𝐜𝐢𝐥𝐢𝐭𝐚𝐭𝐢𝐧𝐠 𝐡𝐞𝐚𝐥𝐭𝐡 𝐝𝐚𝐭𝐚 𝐮𝐬𝐞 𝐚𝐧𝐝 𝐫𝐞-𝐮𝐬𝐞 𝐛𝐲 𝐡𝐞𝐚𝐥𝐭𝐡 𝐩𝐫𝐨𝐟𝐞𝐬𝐬𝐢𝐨𝐧𝐚𝐥𝐬 𝐚𝐧𝐝 𝐫𝐞𝐬𝐞𝐚𝐫𝐜𝐡𝐞𝐫𝐬  ·     There is no concrete roadmap regarding the interoperability to achieve till 2025 ·     Shared data isn´t solving any problem – a lot of data is not standardized which results in frequent misinterpretations and possibly fault analyses ·     In fact, the EHDS is an highly technical complex and massively costly digital infrastructure 𝐈𝐬 𝐞𝐫𝐨𝐝𝐢𝐧𝐠 𝐫𝐚𝐭𝐡𝐞𝐫 𝐭𝐡𝐚𝐧 𝐢𝐧𝐜𝐫𝐞𝐚𝐬𝐢𝐧𝐠 𝐭𝐡𝐞 𝐩𝐮𝐛𝐥𝐢𝐜 𝐯𝐚𝐥𝐮𝐞 𝐠𝐞𝐧𝐞𝐫𝐚𝐭𝐞𝐝 𝐭𝐡𝐫𝐨𝐮𝐠𝐡 𝐡𝐞𝐚𝐥𝐭𝐡 𝐝𝐚𝐭𝐚 𝐬𝐡𝐚𝐫𝐢𝐧𝐠  ·     the authors see too easy access to the data of BigTech companies without measurable and realizable returns on investments for the population ·     They fear that the EHDS will lead to a widening of the digital divide and thus to social inequality 𝐒𝐨 𝐰𝐡𝐲 𝐝𝐨 𝐰𝐞 𝐧𝐞𝐞𝐝 𝐭𝐡𝐞 𝐄𝐇𝐃𝐒 𝐚𝐧𝐲𝐰𝐚𝐲? (𝐆𝐞𝐧𝐨𝐯𝐞𝐬𝐞 𝐞𝐭 𝐚𝐥.)  ✅ 𝐄𝐧𝐡𝐚𝐧𝐜𝐢𝐧𝐠 𝐃𝐚𝐭𝐚 𝐄𝐱𝐜𝐡𝐚𝐧𝐠𝐞:  ✅ 𝐈𝐦𝐩𝐫𝐨𝐯𝐢𝐧𝐠 𝐃𝐢𝐚𝐠𝐧𝐨𝐬𝐭𝐢𝐜𝐬 𝐚𝐧𝐝 𝐌𝐨𝐧𝐢𝐭𝐨𝐫𝐢𝐧𝐠 ✅ 𝐎𝐩𝐭𝐢𝐦𝐢𝐳𝐢𝐧𝐠 𝐎𝐩𝐞𝐫𝐚𝐭𝐢𝐨𝐧𝐬 ✅ 𝐌𝐞𝐝𝐢𝐜𝐚𝐥 𝐞𝐫𝐫𝐨𝐫𝐬 𝐚𝐫𝐞 𝐩𝐫𝐞𝐯𝐞𝐧𝐭𝐞𝐝 𝐛𝐲 𝐢𝐦𝐩𝐫𝐨𝐯𝐢𝐧𝐠 𝐦𝐨𝐫𝐞 𝐚𝐜𝐜𝐮𝐫𝐚𝐭𝐞 𝐝𝐢𝐚𝐠𝐧𝐨𝐬𝐞𝐬. ✅ 𝐈𝐦𝐩𝐫𝐨𝐯𝐢𝐧𝐠 𝐎𝐮𝐭𝐜𝐨𝐦𝐞𝐬

I'm very excited to share our recent publication in the Journal of the American Medical Informatics Association (JAMIA): "Patterns of willingness to share health data with key stakeholders in US consumers: a latent class analysis." In our research, we explored consumer willingness to share health data with different stakeholders (e.g., physicians, tech companies, government orgs). Using latent class analysis, we identified three distinct groups of respondents: ⚠️ Wary - reluctant to share health data with any stakeholder ⚖️ Discerning - bifurcated approach to health data sharing: openness with traditional actors in healthcare and reluctance with distal stakeholders in one’s healthcare 🌐 Permissive - broadly willing to share data but still hesitant when it comes to tech companies and government organizations Our findings reveal significant heterogeneity in health data-sharing attitudes among U.S. consumers, signaling that data privacy policies and practices need to recognize and respond to multifaceted and stakeholder-specific attitudes. This paper is part of my dissertation, which I successfully defended this past fall! Co-authored with Xi Zhu, this study contributes to the ongoing discourse on digital health data privacy. Read the article here: https://lnkd.in/gYZD4gdC Or DM for a pdf! #digitalhealth #dataprivacy #healthinformatics

"Health data is a challenging topic to talk about, but too important not to do it", Gozde Susuzlu Briggs of the European Patients' Forum stated during the first IDERHA Public Forum. Presentations by Christian Muehlendyck, Sumit Madan, Torsten Blum, Anne Funck Hansen, PhD LL.M. (Eur), and Nadja Kartschmit, were concluded by a panel discussion led by Heather M. Colvin. Representatives of patient advocacy groups. and IDERHA's Patient Advisory Board and Clinical Advisory Board engaged with the presenters about how better access to health data can benefit patients, what it means for researchers, how IDERHA is aligning with the EHDS, and much more. It was an inspiring day in Berlin! #patientengagement #datascience #ai #machinelearning #datainfrastructure #dataaccess #healthdata #healthpolicymaking #hta #ehds #lungcancer https://lnkd.in/epkGBwNd

In March 2024, the Council of the European Union and the European Parliament reached a deal on a provisional agreement for the European Health Data Space (“EHDS”) regulation as part of the broader EU data strategy. The Council of the European Union published the compromise text of this agreement as a work-in-progress, providing insights into […] https://lnkd.in/d4H9HWPX www.Cyprus-CEO.com #CEO #business #management #marketing #tech #AI #legal #money

🚨 Exciting news: The Council of the EU has officially adopted the European Health Data Space (EHDS) Regulation! 🚨 https://lnkd.in/gJH4fkxz Just last week, I was presenting at the event of 'Health Research and Secondary Uses: Facing European Health Data Space Regulation', co-organized by the European Federation for Cancer Images (EUCAIM) and Ricard Martínez Martínez at the European Commission Representation headquarters in Madrid 🇪🇸 Some key takeaways from the engaging presentations and discussions: ✴️ The statistics are striking: 1 in 2 men and 1 in 3 women will face a cancer diagnosis. This underscores the urgent need to enable research into new therapies and diagnostic tools. Reusing population data—both from healthy individuals and those affected by illness—is crucial for advancing such efforts. ✴️ Transparent communication with patients is essential: People are naturally willing to help and engage in research. However, acknowledging and appreciating their contributions is critical to fostering trust and collaboration. ✴️  There is a risk of fragmented regulation across Member States, and the community looks to the European Commission to mitigate these challenges by leading with a unified vision of the EHDS ✴️ Simplicity and harmonization must be priorities: Drawing lessons from the rollout of GDPR, we need to avoid repeating past mistakes and focus on creating clear, consistent rules across jurisdictions. ✴️ Overly rigid oversight risks stifling innovation and slowing progress in healthcare AI. Many thanks for Magdalena Kogut - Czarkowska and Valentina Colcelli for the notes and the pictures, and the engaging presentations from Alma Virto, Paula Ceballos Coloma, Saila Rinne, Ruth del Campo, Noemi Civicos, Silvia Lopez-Lastra, PhD, Julian Isla, Ignacio Blanquer Espert, Jose Munuera, Luis Marti-Bonmati, Tapani Piha, Gabriel Lopez Serrano, among others.

XpanDH Blog post series 💡 "One of the pillars of the European Health Data Space (#EHDS) is the secondary use of health data – for research and policymaking, among other purposes. Enter #anonymisation, to make this possible. What is different from #EHR data here? And what implications does this hold for the European Electronic Health Record Exchange Format (#EEHRxF)?" 👉 Read more in the blog post by Carola Schulz from empirica Communication and Technology Research with support of Marina Grossi A. Reis and Radhika Poojara from ECHAlliance - The Global Health Connector https://lnkd.in/dTRuDaV5