24 June 2022, Rotterdam, the Netherlands: The European Health Data & Evidence Network (EHDEN) is an IMI (Innovative Medicines Initiative) programme well into its fourth year. Its goal is to maximise the transformational potential of real world data/real world evidence at scale to facilitate standardised and faster observational research that improves insights in disease, treatment and outcomes for patients across Europe.
To this end, one of its most significant architectural milestones was achieved in the first release of the EHDEN Portal - with free access to the research community. This launch took place today at the OHDSI Europe Symposium 2022 in Rotterdam, the Netherlands. The Portal includes a Data Partner Catalogue and Feasibility Dashboards that support data discoverability (findable under Findable, Accessible, Interoperable and Reusable (FAIR) principles) and is a key research tool in addressing the challenge of Europe being a data ocean but a desert for analysis.
The Portal represents the start of an open platform to facilitate identifying data that is likely to be used for a research topic, through the study workflow to analytical results. It gives researchers more granular insights into EHDEN’s 140-strong Data Partner network with currently more than 500 million anonymous patient records being mapped to the OMOP common data model local to the data.
This will support collaborative research translating into better insights into disease, faster medicines’ development and real world outcomes of treatment, thanks to an accelerated research workflow that will go from months and years to days and weeks. The initial launch will serve an iterative build and will gather feedback over this summer on the Portal’s usability. We encourage researchers to register, try out the functionalities and share their experience so that we may make any needed adjustments.
The Portal content will be continually updated as we include all EHDEN Data Partners when they complete their mapping cycles to the OMOP common data model, but also subsequent modules to support interoperability and reuse via data visiting/remote analyses with standardised analytical tools, again within the FAIR principles. Hence, the Portal will ultimately support the full research workflow from hypothesis and data discoverability through to analytical outputs, with all steps in between.
The Portal also includes links to the EHDEN Academy, which currently offers 17 free and on-demand training modules developed by the OHDSI/EHDEN community, now followed in more than 60 countries, and evidence generated in more than 50 OHDSI/EHDEN publications, study-a-thons and use cases.
For more information and to request an account in the EHDEN Portal, see more here.
Reflections on the Portal launch
“The EHDEN Catalogue is a nice step forward to facilitate data discovery. The data dashboards in particular that show aggregated record counts in the database and many other useful features are a big step up compared to the more traditional questionnaire-type of data catalogues. It’s very exciting to see the EHDEN data network grow so fast. This opens many valuable opportunities for collaborations and will have a positive impact on healthcare – definitely something to be proud of.” Peter Rijnbeek, Professor of Medical Informatics, Erasmus MC, Rotterdam, The Netherlands (Coordinator EHDEN)
“A major challenge for researchers to being able to work with real world, observational data and to generate real world evidence and insights into real world experience of disease, management, treatment, and outcomes, is discoverability of both the data, but also the ability to engage and collaborate with Data Partners. The EHDEN Catalogue, the first module of the EHDEN Portal, is a demonstrable step forward in addressing this, providing more granular insights on data mapped to the OMOP common data model across Europe, while being descriptive and privacy preserving. We are very excited to see the Catalogue goes live!” Nigel Hughes, Scientific Director, Epidemiology, Global R&D, Janssen (Co-Lead EHDEN)
“The EHDEN Portal comprises a diverse set of tools designed to simplify the secondary reuse of electronic health records. It follows a privacy-by-design principle that enables EHDEN Data Partners and other researchers to share OMOP-standardised data. By having access to an ecosystem with +500 million anonymous patient health records, researchers can conduct feasibility studies more easily and much faster.” José Luis Oliveira, Professor, Computer Science DETI/IEETA, University of Aveiro, Portugal (EHDEN Portal Designer)
“With the EHDEN Portal we are building the entry point for an infrastructure that enables the execution of network studies on real world data and the generation of evidence that will lead to better medical decisions and improved outcomes. Due to a broad range of relevant metadata in the database catalogue, high quality data can be easily identified, while the dashboards allow the exploration of available data sets in an intuitive way.” Julia Kurps, Team Lead - Real World Data at The Hyve (Co-Lead technical Workpackage EHDEN)
“With the first release of the Portal, we are enabling data discovery on the largest scale ever. It offers a unique opportunity to participate and have a window into the world of collaborative research. It’s a treasure trove that makes it truly possible to find Data Partners that have OMOP-standardised data that can support their research ideas. Later this year, the second release will also offer a comprehensive study execution module.” Michel Van Speybroeck, Director Data Sciences, Janssen Pharmaceutica (EHDEN Platform Product Manager)
“The enthusiasm across the community for the EHDEN Portal to be publicly accessible is high. EHDEN Data Partners are eager to move to evidence generation after mapping their data to OMOP. More than 60 of them have already published their entry in the Portal and more than 30 others are working on it. The launch of the EHDEN Portal will definitely contribute to expanding network research collaboration and interaction.” Montse Camprubi, Senior Manager, SYNAPSE Research Management Partners (EHDEN Community Manager)
Several Data Partners shared their view on how they see their move to the next and most important evidence generation phase now that they completed their ETL process:
“With the completion of the ETL process, we are keen to move on to the phase of information exploitation. Being able to generate evidence through morbidity and mortality data, and the dissemination of the information obtained from the analyses are the most interesting benefits of the Data Catalogue. Therefore, we would like to receive proposals for studies from the EHDEN Consortium and thus participate through our implemented and validated OMOP repository.” María Teresa García Morales, Fundación de Investigación Biomédica del Hospital Universitario 12 de Octubre, Spain
“After standardisation and harmonisation of our national register, we are looking forward to producing real world evidence for patients undergoing surgery for colorectal cancer. We aim to do so both by utilising the vast, high granular data to investigate relationships between risk factors and short- and long-term outcomes, as well as creating prediction models for clinical use which can help clinicians design optimal treatment trajectories for patients undergoing surgery.” Adamantia Tsouchnika, Center for Surgical Science, Denmark
“The availability of clinical data fully standardised and leveraged is an essential part of designing new research studies, which allow us to build a robust and unified body of evidence, as well as a strategy to effectively communicate this information to key decision-makers.” Miguel A. Mayer, Hospital del Mar Medical Research Institute (IMIM), Spain
Every day, patients are not receiving optimal healthcare because we are not able to tap into the unlimited potential of real world data. In response to this, EHDEN (European Health Data and Evidence Network) was created as a public-private partnership under the framework of the IMI2 (Innovative Medicines Initiative). Its mission is to provide a new paradigm for the discovery and analysis of health data in Europe, by building a large-scale, federated network of data sources standardised to a common data model.
To help educate its project partners and anyone working in the domain of real world data use and real world evidence generation, it created the EHDEN Academy, a free, online learning platform. During the EHDEN project, OHDSI/EHDEN publications, study-a-thons and use cases will validate its work with a focus on health outcomes, measured by relevant health outcome standards.
The European Health Data & Evidence Network has received funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU) under grant agreement No 806968. The JU receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.