Symposium "Big Data for Health & Care: The Arisal of Data Spaces"
April 23, 2024
Corda Campus, Hasselt
Thank you for joining us!
The full report of the symposium can be downloaded below.
Download ReportThe Research Group in Biomedical Data Sciences of UHasselt and The European Institute for Innovation through Health Data (i~HD) hosted the “Big Data in Health and Care: The Arisal of Data Spaces” Symposium on Tuesday 23 April 2024, in Corda Campus, Hasselt.
This well-attended event drew over 150 participants from Belgium and neighboring countries. The symposium featured a series of presentations, panel discussions, and interactive debates moderated by Liesbet M. Peeters and Dipak Kalra. The goal was to explore the complex dynamics of health data ecosystems, address socio-technical challenges, and discuss strategic approaches to data sharing and utilization. The symposium emphasized the importance of making real-world health data accessible for research, innovation, and policy-making.
Session 1 - Borderless insights
Unveiling opportunities & challenges in scaling RWD across Limburg, Flanders, Belgium, and Europe
Dipak Kalra (i~HD)
Keynote by Dipak Kalra (i~HD) – Setting the scene: introducing the European Health Data Space (EHDS) and explaining the overall challenges of scaling-up health data and how they are currently handled at the European level
The link to Dipak Kalra’s presentation can be found here.
Dipak Kalra's comprehensive exploration of the European Health Data Space (EHDS) set the tone for the symposium. He explained the dual approach within EHDS: one focused on primary use for direct patient care and the other on secondary use for research and policy-making. Prof. Kalra elaborated on the challenges exacerbated by COVID-19 but also highlighted how the pandemic accelerated the capacity to learn from health data. For example, the development of EHDS aims to create two "superhighways": one for standardized access to personal health records across Europe and another to enable the secondary use of data under strict ethical standards.
Prof. Kalra's presentation pointed to specific examples, such as the self-certification of EHR systems across Europe and initiatives to improve interoperability, which will require substantial investments in data quality and system testing. He stressed the upcoming changes, including the requirement for understandable audit trails and expanded access to health data for citizens, which could empower patients but also introduces new complexities in data governance.
Presentation by Piet Stinissen (UHasselt) - Health Campus Limburg
The link to Piet Stinissens’s presentation can be found here.
Professor Piet Stinissen discussed the Health Campus Limburg as a microcosm of effective health data usage. He detailed the Corda campus's evolution from a Philips site into a thriving hub for technology innovation, involving over 250 companies and more than 5,000 employees, a true inspiration of what he aspires the Health Campus Limburg in Diepenbeek will become for healthcare innovation.
Prof. Stinissen provided specific examples of how the campus facilitates innovation, such as collaborations with IT and legal departments of hospitals to develop projects like mobile health units and digital pathology services. He highlighted the triple helix model of collaboration involving academia, industry, and government, which has been crucial in fostering an environment where innovative health projects can thrive. One notable project he mentioned was MS Data Connect, an initiative to consolidate scattered clinical data into usable dashboards for clinicians, enhancing the practical utility of RWD in clinical settings.
Piet Stinissen (UHasselt)
Koenraad Jacob (Flanders Department of Care)
Presentation by Koenraad Jacob (Flanders Department of Care) - Flemish Health Data Space
The link to Koenraad Jacob’s presentation can be found here.
Koenraad Jacob presented on the advancements and challenges in scaling real-world data in Flanders. He provided insights into the CareAtlas platform, a project developed rapidly due to the urgent needs presented by the COVID-19 pandemic, which now serves as a predictive model platform for healthcare. Mr. Jacob discussed the disruptive impact of digitalization and AI, framing them as crucial tools for advancing health care but also highlighting the governance challenges they present, such as issues of data ownership and privacy concerns. He touched on the implications of emerging technologies like quantum computing, which he believes will significantly accelerate the processing capabilities needed for large-scale health data analysis.
Presentation by Sofie De Broe (HDA / Sciensano) - Belgian Health Data Agency
The link to Sofie De Broe’s presentation can be found here.
Sofie De Broe explored the creation and role of the Belgian Health Data Agency in standardizing and facilitating the secondary use of health data. She described the structure and mission of the agency, which was significantly influenced by lessons learned during the COVID-19 pandemic. Dr. De Broe provided a detailed view of how the agency aims to serve as a facilitative body, ensuring that health data is collected, standardized, and used responsibly. She used the example of the metadata catalogue that the agency is developing, which will guide users on where data resides and how it can be accessed and used, thereby enhancing transparency and efficiency in health data usage across Belgium.
Session 2 - Breaking barriers
Navigating RWD challenges from first-line to hybrid digital care in transmural integrated settings
Christophe Maes (i~HD)
Keynote by Christophe Maes (i~HD) – Enhancing hybrid digital healthcare: Principles of quality assurance in digital innovations
The link to Christophe Maes’s presentation can be found here.
Christophe Maes, Business Development Officer at i~HD, provided a compelling keynote on the principles of quality assurance in digital health innovations. Drawing parallels with the aviation industry, Mr. Maes emphasized the importance of rigorous standardization, regulation, and training—critical elements that ensure the seamless operation of planes and could similarly revolutionize healthcare. He highlighted the digital transformation in healthcare as being fragmented and encumbered by regulatory and operational barriers, contrasting this with aviation's unified global standards which have significantly reduced incidents.
Mr. Maes pointed to specific projects like Xshare and AssessDHT that are tackling these challenges by harmonizing assessment frameworks and developing shared data standards for healthcare across Europe.
Presentation by Bert Vaes (KUL / Intego) - Primary Care & Population Health Management (PHM)
The link to Bert Vaes’s presentation can be found here.
Professor Bert Vaes from KU Leuven discussed the transformational impact of big data in first-line care, utilizing the Intego database to highlight its pivotal role in primary care morbidity data collection.
Prof. Vaes illustrated how population health management (PHM) leverages this data to improve health outcomes through proactive, rather than reactive, healthcare strategies. He elaborated on specific challenges, such as the shift from supply-based to needs-based healthcare, which remains an aspirational yet unachieved goal. His presentation underscored the utility of automated feedback systems developed during the COVID-19 pandemic, such as the GP barometers that monitor diabetes and antibiotic usage, which exemplify successful applications of RWD in enhancing care quality.
Ingrid Maes (Inovigate)
Presentation by Ingrid Maes (Inovigate) - RWD4BE
The link to Ingrid Maes’s presentation can be found here.
Ingrid Maes explored the potential of Belgium's RWD with the RWD4BE initiative, focusing on outcomes-based healthcare and innovation. She emphasized the complexity of addressing challenges due to the fragmented healthcare landscape and the diverse interests of stakeholders including governments, hospitals, and pharmaceutical companies.
Ms. Maes outlined the multi-stakeholder initiative that co-creates RWD frameworks in Belgium and discussed the implementation at the hospital level, stressing the importance of education, tool development, and policy recommendations to defragment and align various initiatives. She also highlighted the need for EU-level guidance to expand these frameworks beyond hospital data.
Presentation by Hans Danneels (Byteflies) - Remote monitoring (mHealth)
The link to Hans Danneels’s presentation can be found here.
Hans Danneels from Byteflies discussed the transformational potential of wearable technology in healthcare. He shared personal anecdotes to illustrate the practical benefits and challenges of remote monitoring technologies, particularly in managing acute health episodes from home. Dr. Danneels highlighted the need for a healthcare paradigm shift where remote monitoring enables a transition from hospital-based acute care to home-based continuous care, reflecting on the barriers to reimbursement and the slow pace of regulatory change that impedes broader adoption of these technologies.
Hans Danneels (Byteflies)
Session 3 – Data diversity unveiled
Exploring -omics, clinical, and brain-related data in real-world scenarios
Jens Declerck (i~HD)
Keynote by Jens Declerck (i~HD) – Assuring research excellence: strategies for assessing data quality in European projects
The link to Jens Declerck’s presentation can be found here.
Jens Declerck's comprehensive keynote opened Session 3 by addressing the crucial role of data quality in healthcare research. As a PhD student and Data Quality Manager at The European Institute For Innovation Through Health Data, Mr. Declerck emphasized the importance of rigorous data quality assessments as foundational to impactful research and policy-making. He detailed the challenges and methodologies surrounding the evaluation of data quality within the context of the European Health Data Space (EHDS).
Mr. Declerck also introduced the Quantum project, which aims to establish a robust health data quality label specifically for secondary usage. His presentation covered the necessary dimensions of data quality that need to be considered for both primary care data and population-level research data, highlighting the critical role of these dimensions in supporting substantial healthcare improvements across Europe.
Presentation by Annelies Verbiest (UZA) - OHDSI Belgium
The link to Annelies Verbiest’s presentation can be found here.
Dr. Annelies Verbiest presented on the establishment and role of OHDSI Belgium in the third session. As a distinguished medical oncologist at UZA and co-chair of OHDSI Belgium, Dr. Verbiest highlighted the collaborative efforts to enhance health data usability and research reproducibility through standardized, harmonized data frameworks.
Her presentation focused on the challenges of data silos and the impact of harmonized data on patient care and clinical outcomes. Emphasizing the integration of the OMOP model, she discussed how OHDSI Belgium aligns with European standards and adheres to FAIR data principles, driving the evolution of data-driven healthcare innovation.
Annelies Verbiest (UZA)
Wim Vanduffel (KU Leuven)
Presentation by Wim Vanduffel (KU Leuven) - EBRAINS Belgium
The link to Wim Vanduffel’s presentation can be found here.
Professor Wim Vanduffel of KU Leuven, speaking on behalf of EBRAINS Belgium, shared groundbreaking advancements in brain research facilitated by the EBRAINS infrastructure. His presentation, titled "Advancing Neuroscience: Integrative Approaches in Brain Research," explored the integration of various research methods and technologies to understand complex brain functions and disorders.
By highlighting the multidisciplinary efforts required to map and manipulate neural pathways, Prof. Vanduffel underscored the necessity of collaborative European research initiatives like EBRAINS in pushing the boundaries of neuroscience and developing novel therapeutic strategies.
Presentation by Frederik Coppens (VIB Data Core) - ELIXIR Belgium
The link to Frederik Coppens’s presentation can be found here.
Frederik Coppens, head of VIB Data Core and representative of ELIXIR Belgium, discussed the critical role of data management in life sciences in his talk, "Enhancing Research Outcomes Through Standardized Data Practices." He emphasized the need for rigorous data standardization and management across the entire data lifecycle to ensure reproducibility and validity in scientific research.
Detailing ELIXIR's efforts in supporting scientists with advanced data services, Dr. Coppens highlighted the collaborative work on a European scale to facilitate efficient, transparent, and FAIR-compliant research practices.
Frederik Coppens (VIB Data Core)
Session 4 - Synergizing tomorrow
Unveiling strategies to maximize collaboration and progress
Liesbet M. Peeters (UHasselt)
Keynote by Liesbet M. Peeters (UHasselt) – Arisal of data spaces: Why I am excited and worried?
The link to Liesbet M. Peeters’s presentation can be found here.
Liesbet M. Peeters opened the final session with an engaging and thought-provoking presentation titled "Arisal of Data Spaces: Why I am Excited and Worried?". She began by discussing the emergence of data spaces, expressing both her excitement for the potential advancements they could bring and her concerns about the accompanying challenges.
Prof. Peeters elaborated on the current landscape of health data, noting how individual health data is often stored in disparate silos, preventing comprehensive analysis and utilization. This fragmentation is not only an issue for individuals but is a widespread problem affecting everyone. Throughout a person’s lifetime, data is collected in various silos—ranging from medical scans and blood samples to personal health records—yet these datasets remain disconnected. She posed a compelling vision: imagine if all this data were available for research purposes. The possibilities for answering significant health-related questions and advancing medical knowledge could be tremendous.
However, Prof. Peeters underscored the many challenges that accompany this vision. One major obstacle is the limited awareness and engagement among clinicians, government bodies, and researchers about the potential benefits of reusing health data on a large scale. Additionally, there are technical challenges, such as integrating and securing vast amounts of data, as well as governance issues related to data privacy and ownership. She also pointed out the varying expectations from different stakeholders—industries, citizens, and researchers—regarding data use.
In her personal reflection, Prof. Peeters shared her journey and worries about the data landscape. She emphasized the need for strategic efforts to ensure that the emergence of parallel data spaces serves the best interests of all stakeholders. To address these challenges, Prof. Peeters called for a comprehensive catalog of health data initiatives to help achieve strategic oversight and connect the dots in this fragmented landscape. She concluded her presentation by posing a critical question to the audience: "How can we safeguard that the arisal of these parallel data spaces remains in the best interest of all citizens and stakeholders?"
Inspiring panel discussions
The symposium featured engaging panel debates on scaling health data initiatives from local to European levels. Discussions emphasized the importance of harmonizing data practices and aligning regional initiatives with European frameworks through interoperability standards.
Ethical and legal challenges were a key focus, particularly the balance between patient data control and its use for health advancements. The potential of opt-out models for data use was debated, highlighting implications for privacy and research quality.
Future directions included a unified data governance approach and leveraging new technologies to enhance data scalability. The shift from reactive to proactive health management was underscored, with data enabling healthcare providers to anticipate patient needs.
Technological integration, particularly the incorporation of wearable technologies, was discussed, along with the need for temporary reimbursement models to demonstrate their value. Maintaining high data quality standards and integrating diverse data types were also highlighted as crucial for effective research.
The symposium stressed the importance of collaborative strategies and ongoing innovation in data management to improve healthcare outcomes. For a detailed recap of the individual panel debates, please consult the full report.
Meet our speakers
Liesbet M. Peeters
Liesbet M. Peeters
Liesbet M. Peeters (UHasselt) is a pioneering researcher in the field of healthcare and big data, affiliated with UHasselt. Her academic career is centered on the transformative potential of RWD in healthcare, particularly through the innovative use of artificial intelligence and machine learning, with use cases in a variety of disease areas, such as multiple sclerosis. Prof. Peeters's vision that #DataSavesLives drives her dedication to improving patient outcomes and revolutionizing healthcare through intelligent data use.
Prof. Peeters's ability to bridge the gap between biomedical research and data science not only accelerates progress in these fields but also fosters collaboration across disciplines. Her contributions to the intersection of healthcare and big data exemplify the spirit of innovation and highlight the potential of data in enhancing healthcare delivery and patient care.
At the symposium "Big Data for Health & Care: The Arisal of Data Spaces," prof. Peeters delivered a keynote and co-moderated the panel debates, bringing her unique perspective and expertise to the forefront of the discussions.
Dipak Kalra
Dipak Kalra
Dipak Kalra is the President of The European Institute for Innovation through Health Data (i~HD) and a distinguished expert in health informatics. As a keynote speaker and co-moderator at the "Big Data for Health & Care: The Arisal of Data Spaces" symposium, prof. Kalra provided valuable insights into the development of health data spaces in Europe. His keynote focussed on the European Health Data Space (EHDS) and the challenges of scaling up health data management at the European level.
Prof. Kalra's career is dedicated to advancing Electronic Health Records (EHR), including the development of ISO standards for EHR interoperability. He has led numerous Horizon 2020 and IMI projects, significantly impacting the field of health informatics. Additionally, he serves as a Professor of Health Informatics at University College London and is a visionary in eHealth privacy, contributing to the governance, quality, and interoperability of health data.
Piet Stinissen
Piet Stinissen
Prof. Piet Stinissen is a distinguished professor of immunology and the prodean at the Faculty of Medicine and Life Sciences at Hasselt University. With a rich history in leadership, he served as the dean of the Faculty of Medicine and Life Sciences from 2009 to 2022 and directed the Biomedical Research Institute (BIOMED) at Hasselt University prior to that. His scientific work focuses on autoimmunity, multiple sclerosis, and healthcare innovation.
Currently, Prof. Stinissen leads the Limburg Clinical Research Center (LCRC), promoting collaboration between UHasselt and the ZOL and Jessa hospitals. He is also the co-chair of the University MS Center UHasselt-Pelt and chairs the task force for Health Campus Limburg. At the symposium, he discussed the impact of local health data spaces, with a particular emphasis on Health Campus Limburg, which integrates business, government, education, health institutions, and citizens to advance healthcare innovation.
Koenraad Jacob
Koenraad Jacob
Koenraad Jacob is a leading data scientist at the Flanders Department of Care, renowned for his expertise in statistical analysis and machine learning. His ability to transform complex data into actionable insights makes him a pivotal figure in the field of Real-World Data (RWD). With a career focused on bridging the gap between technical data science and business strategy, Mr. Jacob exemplifies innovation and practical application.
As an experienced AI translator and tutor, he has extensive knowledge in deploying data for segmentation, forecasting, recommendation engines, and more. At the symposium, Mr. Jacob shared his insights on scaling RWD across Flanders, delving into pioneering strategies and practicalities. His session provided attendees with a roadmap to unlocking the full potential of data to drive forward health and care innovation in the region.
Sofie De Broe
Sofie De Broe
Sofie De Broe is a seasoned statistical analyst and methodologist with extensive experience from Sciensano. Currently at the forefront of Belgium's health data evolution, she has played a pivotal role in enhancing health data access and availability, particularly in the wake of the COVID-19 pandemic.
In March 2023, Belgium established the Health Data Agency (HDA), a significant milestone in the country's efforts to collect, standardize, and responsibly use health data. Dr. De Broe, who served as the interim head of the HDA, is now the Scientific Director of Data Governance at Sciensano. Her expertise in overcoming the challenges posed by Belgium's federal structure and her vision for a unified health data ecosystem are crucial for understanding and navigating the complexities of scaling Real-World Data (RWD) in Belgium.
Christophe Maes
Christophe Maes
Christophe Maes is a distinguished expert in healthcare data quality and process management. He serves as the Business Development Officer at i~HD, focusing on enhancing healthcare data quality. Additionally, he is a Project Manager at the European Commission and a Healthcare Management Consultant for Inaequo bvba. Mr. Maes’s expertise lies in integrating digital innovations with traditional healthcare practices, providing invaluable insights into the future of healthcare.
His extensive experience in navigating the complexities of real-world data (RWD) and applying quality assurance principles to digital healthcare innovations makes him a leading figure in the field.
Bert Vaes
Bert Vaes
Bert Vaes is an esteemed MD, general practitioner, and Professor at KU Leuven. He is a leading expert in first-line care and the use of big data to revolutionize this essential healthcare sector. Dr. Vaes is at the forefront of the INTEGO database, a pioneering project initiated in 1990 at KU Leuven's Academic Center of General Medicine. INTEGO is Belgium's first automated general practitioner registration network, providing comprehensive data on primary care morbidity. This database offers valuable insights into disease incidence, prevalence, diagnostic tests, and treatments in Flanders, serving as a foundation for innovative research and healthcare improvement.
Dr. Vaes's work also focuses on Population Health Management (PHM), a proactive approach leveraging data and risk stratification to enhance health outcomes, facilitate cross-sector collaboration, and address health inequalities.
Ingrid Maes
Ingrid Maes
Ingrid Maes is a luminary in the pharmaceuticals and life sciences industry with over 30 years of experience. She is the founder and managing director of Inovigate in Antwerp, Belgium. Ms. Maes has held leadership roles at Siemens and PwC for 15 years, showcasing her expertise in R&D, manufacturing, and regulatory compliance. She excels in integrating science and technology with strategy and finance, focusing on industry insights, market analysis, and strategy formulation, particularly in growth, innovation, and multi-stakeholder collaboration.
Ms. Maes is a key force behind the RWD reuse framework and its implementation via the RWD4BE initiative, demonstrating her commitment to advancing healthcare through data. At the symposium Ms. Maes delivered a session titled "Unlocking Belgium's Health Data Reuse Potential: The RWD4BE Initiative," providing deep insights into the transformative potential of real-world data in healthcare.
Hans Danneels
Hans Danneels
Hans Danneels is the co-founder and co-CEO of Byteflies, an Antwerp-based medtech company established in 2015. Byteflies develops sensor technology for remote patient monitoring, reducing hospital pressure and enhancing patient comfort. The company gained momentum during the COVID-19 crisis, raising 4.5 million euros to scale its operations. Their technology is used in 30% of Belgian hospitals and is expanding to Germany, the Netherlands, and the US.
Dr. Danneels advocates for digital solutions in healthcare, emphasizing collaboration with stakeholders to enrich the current system. At the symposium, he discussed how Byteflies' wearable technology captures data and transforms it into actionable insights, streamlining care and facilitating value-based healthcare.
Jens Declerck
Jens Declerck
Jens Declerck is a PhD student and Data Quality Manager at The European Institute For Innovation Through Health Data (i~HD). He plays a key role in the QUANTUM project, which aims to develop and implement a health data quality label for the EU. This project seeks to create a common label system to ensure data quality and utility for scientific and health innovation purposes.
Mr. Declerck delivered a keynote entitled "Assuring Research Excellence: Strategies for Assessing Data Quality in European Projects," where he guided us through vital data quality aspects and strategies aligned with European project standards.
Annelies Verbiest
Annelies Verbiest
Dr. Annelies Verbiest is a distinguished medical oncologist at UZA and the co-chair of OHDSI Belgium. She plays a key role in enhancing health data harmonization to improve data-driven insights in healthcare.
Dr. Verbiest is committed to aligning with European standards and embracing FAIR data principles to advance health data science and contribute to global and European health data integration.
Wim Vanduffel
Wim Vanduffel
Prof. Vanduffel is a Full Professor at KU Leuven (as part of the Leuven Brain Institute) and an Assistant Professor at Harvard Medical School, renowned for his expertise in neuroimaging and brain research. He has led significant advancements in primate and human brain imaging, contributing to the understanding of brain function and structure through innovative techniques and collaborative research.
Prof. Vanduffel is a key figure in EBRAINS Belgium, a component of the pan-European research infrastructure from the Human Brain Project, enhancing brain research through advanced imaging, data analyses, and a commitment to interoperability.
Frederik Coppens
Frederik Coppens
Frederik Coppens is the Head of VIB Data Core and ELIXIR Belgium. He leads the VIB Data Core, an initiative supporting scientists with advanced data services focused on quality, standardization, and efficiency in data handling, adhering to FAIR principles. His efforts span the entire data life cycle, enhancing research outcomes across the VIB Research Centers.
Dr. Coppens is also involved with ELIXIR, Europe's leading life-science research infrastructure, pioneering research data management and analysis. His work emphasizes reproducible science and impacts a broad spectrum of research fields.
Sponsors
This symposium was supported by the following sponsors:
