VEIL.AI’s Post

👉 Attended a captivating panel discussion led by Michele Thonnet on "The European Health Data Space: What Concrete Progress and National Obstacles? A Comparative Rights Approach" at the "European Health Data Space and AI" symposium at Université Toulouse Capitole . 🇫🇷 Mario Jendrossek introduces the Health Data Hub, a French initiative involving 17 partners from over 10 countries. Established in 2019 as a continuation of SNDS, it serves as a one-stop-shop for health data in France, boasting a secure platform and a catalog of medico-administrative data. Pilot version underway, paving the way for EHDS. 🇧🇪 Elise Degrave and Jean-Marc Vangyseggem shed light on Belgium's decentralized approach, emphasizing the importance of not putting all eggs in one basket. Institutions and links are identified, ensuring data sharing with a unique identifier. However, challenges arise in EHDS due to its less granular approach. 🇸🇪 In Sweden, the challenge of coordinating 21 regions in implementing unified healthcare policies persists, along with seamless data sharing hurdles. Despite progress, voluntary participation in new legislation prompts reflection on the feasibility of a unified approach aligned with EU standards. 🇨🇿 In the post-communist era, Petra Müllerová explains that the Czech Republic faces challenges in implementing a unified electronic health record system due to varied legislation and voluntary participation. However, recent steps, including the passing of a law in 2023, signal a growing awareness of the need to act promptly, even before EHDS implementation. Yet, there's the looming risk of having to adapt to European standards once again, highlighting the complexity ahead. 💡 Reflecting on the discussion, I recall two key insights: trust in healthcare data isn't something we can simply declare; it must be earned through transparency and accountability. Additionally, the digital gap remains a significant challenge, with many citizens still lacking access to their health information, while some practitioners continue to rely on paper records. #HealthData #EHDS #HealthTech #EURegulations #DataInteroperability 🏥💻

🌟 Reflecting on the success of our recent symposium on April 23rd, "The Arisal of Data Spaces: Big Data in Health and Care," co-hosted by The The European Institute for Innovation Through Health Data and UHasselt 🎤 Annelies Verbiest provided an insightful presentation on the establishment and critical role of OHDSI Belgium. She highlighted the collaborative efforts to enhance health data usability and research reproducibility through standardized, harmonized data frameworks. The Belgian OHDSI Node, born spontaneously from the Belgian IMI_EHDEN community, has quickly established itself as a vibrant and collaborative group. With a flat organizational structure and no centralized funding, it empowers its members to actively contribute and benefit from the thriving OHDSI community. 🔍 The Node's mission is to leverage health data to improve citizen health through a trustworthy foundation that offers FAIR data and clear governance. Annelies delved into the challenges posed by data silos and showcased the transformative impact of harmonized data on patient care and clinical outcomes. She emphasized the integration of the OMOP model, discussing how OHDSI Belgium aligns with European standards and adheres to FAIR data principles, propelling the evolution of data-driven healthcare innovation. 🎯 The objectives of OHDSI Belgium are clear: 🏗️ Build a thriving Belgian OHDSI community, including all stakeholders (citizens, data holders, data users, SMEs). 📢 Create visibility and awareness within and beyond the Belgian OHDSI community. 🤝 Serve as a point of contact and matchmaker for OMOP expertise, services, or data. 🌟 Promote inspirational use cases. 📬 Keep the Belgian OHDSI community informed with communications, best practices, member activities, and funding opportunities. 🔧 Promote technical harmonization by supporting OMOP mapping efforts and collaboration on harmonized mapping, especially for Belgian terminologies. 💪 Empower members working on specific topics through dedicated Node working groups. 👀 Stay tuned! We will soon share a comprehensive report summarizing the key messages and the detailed slides from the symposium. ----------------------- 👩🎓 Who am I? 👉 Data Scientist - Entrepreneur - Idealist 👉 I envision a world where every single person gets the treatment they deserve in a timely matter. I am convinced that #DataSavesLives. Therefore, my research focuses on investigating new methods to handle and analyze #BigData in #Health & #Care. 👉 I am an assistant professor in biomedical data sciences, affiliated with Biomedical Research Institute (BIOMED-UHasselt) and the Data Science Institute (DSI_UHasselt), within the Faculteit Geneeskunde en Levenswetenschappen UHasselt at UHasselt. 👉 More details on our website: https://lnkd.in/eGWyx2Da

Harnessing the Power of Big Data in Pragmatic Trials: A New Frontier in Health Research In today's healthcare landscape, both public and private health systems in Mexico and around the world are generating massive volumes of transactional data daily. This treasure trove of information presents a unique opportunity for the field of clinical research, especially in the realm of Phase IV pragmatic trials. The Opportunity in Real-World Data Pragmatic trials, by their nature, are designed to evaluate the effectiveness of interventions in real-world clinical settings. The vast data being generated in healthcare transactions are a goldmine for such studies. They provide a rich, real-time, and comprehensive view of patient outcomes, treatment efficacy, and healthcare utilization. By tapping into this data, researchers can design and conduct more informed, relevant, and impactful Phase IV trials. Real-World Data and Phase IV Trials Phase IV trials, conducted after a drug or treatment has been marketed, are crucial for understanding long-term effects and real-world effectiveness. Utilizing real-world data from healthcare systems can revolutionize how these trials are structured and conducted. By analyzing patterns and outcomes from everyday clinical practice, researchers can gather insights that are not only more reflective of actual patient experiences but also more generalizable to broader populations. Ethical Considerations and Patient Privacy While leveraging big data in healthcare research opens new avenues for discovery, it also raises important ethical considerations. Ensuring patient confidentiality is paramount. This is where advanced algorithms for patient data anonymization come into play. By using these techniques, we can protect patient identities while still accessing rich datasets for research. Moreover, using accessible and complete medical records is essential for the integrity and reliability of pragmatic trials. It ensures that the data used is not only comprehensive but also ethically sourced and utilized. Conclusion The intersection of big data in healthcare and pragmatic trials represents a promising frontier in clinical research. By harnessing the power of real-world data, we can conduct more effective and relevant Phase IV trials, ultimately contributing to better healthcare outcomes. However, this must be balanced with stringent ethical practices, ensuring patient privacy and data integrity. Let's embrace this new era of data-driven healthcare research, where real-world data meets innovative trial design, all while upholding the highest standards of ethical practice. #HealthcareData #PragmaticTrials #ClinicalResearch #DataEthics #RealWorldEvidence #PhaseIVTrials #artificialintelligence

⚕️European Parliament approved European Health Data Space last week. #EHDS will give EU citizens more control over their health data and provide valuable data for researchers. EHDS was also a main topic of the conference "Our healthcare will be digital" organized by think tank Ministr zdraví. Here are few notes & comments from this event: ▶️ It requires a lot of time and negotiation skills to have such a regulation approved -> great overview by Health Attache to the EU Kristýna Králová. ▶️ During panel discussion Barbora Dubanska asked if we are ambitious enough. Are we? And will we be? Hopefully with EHDS we will not be building additional local specifics. ▶️ I liked the comment of Michal Bláha that digital literacy of Czech citizens is above EU average. So, it seems digital literacy is not the blocker here. ▶️ Very well formulated emphasis on access to pseudonymized data to enable & accelerate research by Martin Palička. Martin also highlighted the importance of education at medical universities. ⏺️ I am looking forward to seeing how high-quality #data in combination with the power of #AI will transform healthcare. Thank you Petr Čermák & team, for great organization. Photo by Aleš Vopat. #EHDS #EUDigitalHealth #ministrzdravi

It's DMEA - Connecting Digital Health this week in Berlin. Time for a throwback to our Digital Health Dinner in November. Led by the amazing Niklas Laasch we dived deep into "Interdisciplinary Teams in Healthcare AI": Introducing new roles that bring AI knowledge (e.g.symptom prediction or data analysis of biomarker) to healthcare teams can increase innovation speed and open new opportunities in leveraging data. To make these additions to the team a success one should: 👉 Bridge Knowledge Gaps: Foster a shared language between tech and healthcare pros for better teamwork. 👉 Stay Patient-Centric: Use tech to improve, not complicate, patient experiences. 👉 Prioritize Privacy & Ethics: Navigate the tricky terrain of data use in healthcare with care. 👉 Follow Regulations: Keep up with laws like the EU AI Act to stay compliant. Seamless Integration: Blend new AI tech with existing healthcare systems without hitches. Facing these challenges or have insights? Drop your thoughts below! P.S.: 🤫We are working on a whitepaper in this space - if that’s of interest to you, comment “whitepaper” below and we’ll make sure to get you one! 🙂

🎉 𝐆𝐞𝐫𝐦𝐚𝐧𝐲 𝐢𝐬 𝐟𝐢𝐧𝐚𝐥𝐥𝐲 𝐛𝐞𝐜𝐨𝐦𝐢𝐧𝐠 𝐝𝐚𝐭𝐚-𝐝𝐫𝐢𝐯𝐞𝐧 𝐢𝐧 𝐡𝐞𝐚𝐥𝐭𝐡𝐜𝐚𝐫𝐞 🎉 Churchill once said: Never waste a good #crisis! 😔 Unfortunately, #progress usually requires crises because otherwise people are too convenient to change the status quo, but it would be worse not to draw any conclusions after all! Germany and European countries did. Our working group meeting in the #pharmaceutical board of Bitkom was about exactly that: 👉 𝐆𝐞𝐫𝐦𝐚𝐧𝐲 𝐡𝐚𝐬 𝐟𝐢𝐧𝐚𝐥𝐥𝐲 𝐩𝐚𝐬𝐬𝐞𝐝 𝐚𝐟𝐭𝐞𝐫 𝐭𝐡𝐞 𝐜𝐨𝐫𝐨𝐧𝐚 𝐜𝐫𝐢𝐬𝐢𝐬 𝐚𝐥𝐥 𝐤𝐢𝐧𝐝𝐬 𝐨𝐟 𝐥𝐚𝐰𝐬 𝐨𝐧 𝐝𝐚𝐭𝐚 𝐮𝐬𝐞, 𝐝𝐢𝐠𝐢𝐭𝐚𝐥𝐢𝐳𝐚𝐭𝐢𝐨𝐧 𝐚𝐧𝐝 𝐫𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐮𝐧𝐝𝐞𝐫 𝐭𝐡𝐞 𝐜𝐮𝐫𝐫𝐞𝐧𝐭 𝐜𝐨𝐚𝐥𝐢𝐭𝐢𝐨𝐧. A European data health space (EDHS) is also being implemented at European level. This is not to be a half-heartedly managed database, but at best underpinned by its own data infrastructure in order to have all health-related data available in real time for analytical purposes on the e.g. effectiveness and safety of treatments, infectious events, influential factors on individual health outcomes and so much more. 𝐈𝐧 𝐭𝐡𝐞 𝐟𝐮𝐭𝐮𝐫𝐞, 𝐨𝐮𝐫 𝐡𝐞𝐚𝐥𝐭𝐡𝐜𝐚𝐫𝐞 𝐬𝐲𝐬𝐭𝐞𝐦 𝐰𝐢𝐥𝐥 𝐛𝐞𝐜𝐨𝐦𝐞 𝐚 𝐥𝐞𝐚𝐫𝐧𝐢𝐧𝐠 𝐡𝐞𝐚𝐥𝐭𝐡𝐜𝐚𝐫𝐞 𝐬𝐲𝐬𝐭𝐞𝐦 - 𝐢𝐧 𝐫𝐞𝐚𝐥 𝐭𝐢𝐦𝐞! With Christian Buggedei (Charité), Christoph Wagenblast (Federal Ministry of Health) and Tomislav Sokol (European Parliament), we had three experts who presented and discussed current developments in policy and implementation from first-hand experience. Major takeaways: ✅ Clinics can finally analyze patient data across their departments and other clinics for their own research purposes and use the findings to improve healthcare ✅ Patients want to manage and participate in their own health, as they have often felt left alone until now ✅ Patients have no problem sharing their data for better individual and societal outcomes, they just don't want it to be misused, spammed on or discriminated against ✅ The Data Use Act in Germany and the European Health Data Space pursue 3 main objectives: - Improving citizens' access to and control over their own health data - Data availability for healthcare (national and EU-wide) in a standardized data infrastructure - Enabling secondary use for all public-interest research projects via EU-wide governance under strict conditions, including for AI use 👏 Sure, it will be a few years before the vision is fully implemented, but thousands of people are working every day to help us #live #longer and #healthier lives. Thank you Gustav Spät Tobias J. Schulz Delia Strunz Markus Mundhenke Johannes Lynker and Natalie Barkei for setting this up!

Nice little summary of the institutions that are to play a role in the possibly upcoming #EHDS:

I am currently in Berlin to participate in IDERHA's annual meeting. Here I am part of the discussions about the secondary use of health data. We are part of one of the pioneering research initiatives funded through the @Innovative Health Initiative (IHI), a public-private partnership (PPP) forged between the European Union and the European life science industries. I am excited to be working with colleagues in @DEFACTUM and laying the groundwork for future health data. However, participating in a large-scale European project aimed at effecting positive change and ensuring that patients'/citizens' perspectives are incorporated into our forthcoming recommendations presents a challenge. Indeed, patients/citizens play a crucial role. Concerns about privacy and distrust may limit patients' willingness to share data for improving future healthcare. The success of data sharing is dependent on meaningful incentives and altruistic values that encourage active participation throughout the data lifecycle. This endeavour remains difficult due to differing interpretations across the EU and the various regulations governing data processing situations such as public health or scientific research. The complexity is exacerbated by the various regulations that govern both for-profit and non-profit organisations. Our consortium, which includes academia, industry, health authorities, clinicians, and patient representatives, is dedicated to addressing the challenges associated with accessing, integrating, and analysing health data in order improve the potential value for both patient care and research. #data #health #research #GDPR

#AHRQ’s Digital Healthcare Research Program staff and PIs are participating in 28 sessions at #AMIA2023! AHRQ staff session highlights are below and a full list of presentations is available here https://bit.ly/49s50pa • Integrating Patient Preferences in Patient-Centered Clinical Decision Support: Where Are We Now and Where Do We Go Next? • A Dashboard for Shared Decision-Making: Putting Patient-Generated Health Data and Clinical Decision Support Together • Townhall on Informatics Priorities for Government Agencies • Challenges and Opportunities Identified from Workflow Execution Models for Advancing Patient-Centered Clinical Decision Support • Using A Stakeholder Driven-Process to Advance Patient-Centered Clinical Decision Support: Visual Framework for Clinical Decision Support Innovation Collaborative (CDSiC) Efforts • Making EHRs SAFER: Evidence-based Informatics Solutions for Supporting Clinician Cognition • Clinical Decision Support Resources Should be Freely and Publicly Available to All • MedMorph Implementation Guidance: Navigating the Standards Stack • Implications of Digital Advances on Clinical Guideline Trustworthiness and Dissemination Through a Reimagined National Repository