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Author: Irene Gebuis

Towards a standard concept recommendation for Federated Intensive Care research: The INDICATE Data Dictionary

Written by Irene Gebuis on . Posted in News.

On April 20, Boris Delange (MD, Medical Informatics, Université de Rennes) presented the INDICATE Data Dictionary at the OHDSI Europe Symposium 2026, the yearly meeting of the European OHDSI community, gathering researchers, clinicians and data scientists working on federated health data using the OMOP common data model.

Through a live demo, Boris showed how the Data Dictionary supports multidisciplinary teams working with medical concepts in OMOP — by providing peer-reviewed, versioned concept sets enriched with clinical context and ETL guidance.

Why does this matter? Before any federated analysis can run across hospitals, each site must map its local data to the same shared vocabulary. This “concept mapping” step is essential but notoriously time-consuming, and small inconsistencies between sites can silently bias results. By offering a curated, transparent library of ICU concept sets – with review workflows, semantic versioning, and expert comments – the INDICATE Data Dictionary makes this step faster, more reliable, and easier to share across institutions.

The session also sparked valuable discussions on integration within the OHDSI ecosystem and on extending the approach beyond ICU.

The Data Dictionary is open source and runs entirely in the browser: no server, no login, no install. Anyone can browse the 300+ ICU concept sets, propose reviews on GitHub, or deploy their own instance in minutes.


Explore the INDICATE Data Dictionary via GitHub.

Trust over rules and regulation: what really determines success in health data ecosystems

Written by Irene Gebuis on . Posted in News.

The first session of the INDICATE Training Programme on Legal Framework kicked off! These sessions are running in parallel with and complementing the ongoing Data Models sessions.

This training programme provides participants a comprehensive understanding of the INDICATE legal framework, covering General Data Protection Regulation (GDPR) and European Health Data Space (EHDS) principles. The sessions focus on data protection and privacy-enhancing technologies, governance and rulebook structures, and practical skills to navigate data access processes, requirements, and organizational challenges within INDICATE. 

The first session, led by Ricard Martínez Martínez (Universitat de Valencia), explored how law, technology, and organisation together shape the use of health data in research. A key message was that rules are important, but it is not enough on its own. Trust and responsibility are just as important.

Several important topics were discussed:

  • Trust and reputation matter in research. It is not only about following the law. Organisations must also show clearly that they handle data in a responsible way. Without trust, collaboration and research can be at risk.
  • Clear governance and roles are essential. In complex data systems, it must be clear who is responsible for what. Researchers, project managers, data protection officers, and platform teams all have different roles. Without clear responsibilities, risks increase.
  • Anonymisation is more complex than it seems. Making data truly anonymous is not easy. It requires continuous risk assessment, technical measures, and careful monitoring to reduce the risk of re-identification.
  • Balancing innovation and privacy. In healthcare research, there is a need to learn from data while protecting patient privacy. Data minimisation does not mean using as little data as possible, but using the right data for a clear purpose.
  • Privacy-enhancing technologies are becoming essential. New technical solutions allow researchers to analyse data without directly accessing raw data. This helps protect privacy while still enabling valuable research.

The session also highlighted that European developments, including the European Health Data Space and emerging AI regulations, will strongly shape how health data research is organised in the coming years. Active engagement from the research community is therefore essential.

A key takeaway from the session is that legal rules and regulations, technical design, security, and ethics are deeply connected. Real progress in health data research happens when all of these elements work together, supported by a strong culture of responsibility and trust.

The INDICATE project receives funding from the European Union’s Digital Europe Programme under Grant Agreement number 101167778.

Anouk Kruiswijk

Written by Irene Gebuis on . Posted in Profiles.

Position: Work Package 3

Who am I & what do I do?

My name is Anouk Kruiswijk and I am a senior consultant at KPMG The Netherlands. I started my career as a PhD student at the Leiden University Medical Center where I worked at the intersection of clinical research and artificial intelligence. After my PhD, I transitioned into consultancy, allowing me to combine academic research with real-world implementation and strategy. I very much enjoy working at the boundary of these two worlds!

What am I up to during INDICATE?

Together with my colleague Mark van Driessen, I am responsible for Work Package 3 within INDICATE. In this role, we advise the project on how to set up a sustainable INDICATE ecosystem beyond the project phase. This includes designing the legal entity, developing governance structures, defining clear roles and responsibilities, shaping a viable business model, and outlining a realistic implementation roadmap. Our goal is to ensure that INDICATE can grow into a durable European infrastructure that continues to create value after the project ends.

What motivates me to be part of INDICATE?

With my background as a researcher, I know how crucial high-quality and accessible data is for research and for improving patient care, but also how challenging it can be to access the right data, especially across hospitals and national borders. At the same time, I have often seen valuable initiatives struggle or come to a halt once the project phase ends. INDICATE brings together academia, healthcare practice, industry and consultancy, and that combination motivates me greatly. I strongly believe that by connecting these worlds, we can turn INDICATE into a truly sustainable and impactful infrastructure that helps to further improve patient care.

What do I expect to accomplish within INDICATE?

Within INDICATE, I hope to help build a future-proof organisational and governance foundation that enables long-term collaboration, trust and scalability. Success for me means that INDICATE does not end as a project, but continues as a stable platform that supports research, innovation and patient-centred care across Europe.

How does my background or expertise contribute to the goals of INDICATE?

My strength lies in bridging research and practice. By combining an academic background in medical AI with consulting experience in governance, strategy and implementation, I aim to help translate ambitious clinical and technological goals into workable structures that function in real-world healthcare settings. This combination allows me to connect different perspectives and contribute to INDICATE’s goal of creating a trustworthy, sustainable European ICU data infrastructure.

The OMOP Common Data Model explained: speaking the language of health data

Written by Irene Gebuis on . Posted in News.

The second training of the INDICATE Training Programme on Interoperability, OMOP and Vocabularies took place on April 9, 2026. The programme is designed to support data providers in using the INDICATE infrastructure effectively, securely, and in a fully standardised way. It helps participants, such as clinicians and data engineers, build both the conceptual understanding and practical skills needed to work with interoperable health data.

During this second training, led by Maxim Moinat (Researcher, Medical Informatics, Erasmus MC) and moderated by Boris Delange (MD, Medical Informatics, Université de Rennes), participants learned that data from different hospitals and institutions must be made interoperable to enable research at a European level. However, this is only possible when data is structured in a way that makes comparison meaningful and reliable.

This is where standardisation becomes essential. Without a shared structure, data remains fragmented across systems, making large-scale analysis difficult or even impossible. By harmonising data into a common format, researchers can generate evidence that is consistent, reproducible, and scalable across countries.

The OMOP Common Data Model provides exactly this; a shared way of organising patient data and a shared vocabulary for describing clinical events, so that hospitals across Europe can describe the same reality in the same terms. Maxim walked participants through the main building blocks of the model and showed how they apply to ICU data, with concrete examples detailed during the session. He also presented the wider OHDSI community and European networks such as EHDEN and DARWIN EU, which already federate data on hundreds of millions of patients.

Maxim then walked participants through the full journey from raw hospital data to interoperable, OMOP-formatted data, step by step, from the initial exploration of the source system to the final validation of the mapped database. At each stage, he introduced the corresponding tools from the OHDSI ecosystem, a suite of open-source resources designed to support data providers throughout the process. He also showed how the INDICATE Data Dictionary, presented in Session 1, fits into this journey by guiding data providers on which clinical concepts to prioritise for mapping.

The session concluded with key take-home messages on the importance of clear mapping specifications, vocabulary alignment, and the value of a shared data model for enabling collaborative research across institutions and countries.

Overall, the training provided participants with both a conceptual and practical understanding of how the OMOP CDM and the surrounding OHDSI ecosystem support interoperable and scalable health data research within INDICATE.

The next training will focus on the ETL Workflow, data preparation requirements, and data quality expectations and is planned on May 7 2026. 

Read more about the first training.

Marcel Giemsa

Written by Irene Gebuis on . Posted in Profiles.

Position: Work Package 6

Who am I & what do I do?

My name is Marcel Giemsa, and I work as a Research Associate at the Department of Cardiology, Pulmonology and Angiology at the University Hospital Düsseldorf, in the group of Prof. Dr. Dr. med. Christian Jung. I hold a Bachelor’s degree in Biology from Ruhr University Bochum, and this summer I will complete a second Bachelor’s degree in Computer Science at Heinrich Heine University Düsseldorf. I originally joined Christian’s group as a student assistant, and after some time he asked me whether I would like to take on a larger role within the team — which is how I ended up working on INDICATE.

What am I up to during INDICATE?

Within INDICATE, I am responsible for the coordination of Work Package 6 and take on technical coordination tasks across the project. This includes a fair amount of hands-on project management, as well as supporting data analysis activities. A core part of my role is acting as a bridge between the clinical and the technical domains: translating clinical requirements into technical specifications, and making sure that the technical work stays aligned with the real-world needs of the ICUs and clinicians we serve. Because WP6 sits at the intersection of so many topics, a lot of my day-to-day work is about keeping the different threads connected and making sure information flows between the people who need it.

What motivates me to be part of INDICATE?

Combining medicine and IT has been something I wanted to do for as long as I can remember. It is the reason I studied both Biology and Computer Science in the first place. Working with Prof. Jung has been a great experience from day one: we quickly realized that our backgrounds complement each other well, and there is a lot of mutual trust in what each of us brings to the table. On top of that, AI in medicine is a field I find genuinely exciting, and at the same time one of the hardest when it comes to getting access to high-quality data. INDICATE tackles exactly that bottleneck, and being able to contribute to a project that works on this problem at a European scale is a rare opportunity that I didn’t want to miss.

What do I expect to accomplish within INDICATE?

On a personal level, my main goal is to deeply understand how a large EU project like INDICATE is structured — from governance and reporting to the technical coordination between dozens of partners — and to learn which pitfalls tend to come up along the way. EU projects are complex, and a lot of the knowledge about how to run them well is experience-based. I want to build exactly that kind of experience, so that in future EU projects I can help avoid problems before they occur and contribute from an even stronger starting position. Beyond that, I hope to see WP6 deliver results that genuinely support the wider project and the clinicians and researchers who will eventually work with the INDICATE infrastructure.

How does my background or expertise contribute to the goals of INDICATE?

My dual background is what I try to bring into the project every day. From Biology, I bring scientific working practices and an understanding of biological and medical processes, which helps me engage meaningfully with clinical partners and the use cases we are building around. From Computer Science, I bring a solid foundation in machine learning and in thinking about data and systems. In a project like INDICATE, where clinicians, data scientists, engineers, and ML researchers all need to work together, the biggest challenge is often not the individual disciplines but the communication between them. Because I know both “camps” from the inside, I can translate between them, ask the right questions on either side, and help make sure that technical decisions respect clinical reality — and vice versa. That is the contribution I try to make within INDICATE.

INDICATE Training Programme – Legal Framework

Written by Irene Gebuis on . Posted in News.

In order to support all consortium members in using the INDICATE infrastructure effectively, correctly, and securely, we are organizing a three-session series of the INDICATE Training Programme on Legal Framework, running in parallel with and complementing the ongoing Data Models sessions. 

The programme will give participants a comprehensive understanding of the INDICATE legal framework, covering GDPR and EHDS principles, data protection and privacy-enhancing technologies, governance and rulebook structures, and practical skills to navigate data access processes, compliance requirements, and organizational implementation challenges within INDICATE.

Session dates

All sessions will be held from 14.00 – 16.00 (CEST) via Zoom.

  • May 4 – Session 1 | Understanding GDPR
  • June 24 – Session 2 | Understanding and using Data Access
  • September 10 – Session 3 |  Understanding the Rulebook and legal onboarding steps