Rotterdam, the Netherlands, 15th and 16th of January - The European Health Data and Evidence Network (EHDEN) held its kick-off meeting in Rotterdam, aboard the historic “SS Rotterdam”.
Nearly 75 participants, representing each of the 22 partners, were present to celebrate the start of this inspiring journey together.
This venue was chosen because of its symbolic relevance. The SS Rotterdam is a former cruise ship which connected different continents, in particular between Rotterdam and New York, the home of OHDSI. The ship had a ground-breaking design which has impacted ship-design even until today. Very much alike, the EHDEN project aspires to connect different experts and stakeholders in a public private collaboration, and was designed with sustainability in mind in order to have a long-lasting impact on how we use real-world data to create evidence and ultimately, value for patients.
“It was fantastic to be able to start the project with this large group of highly motivated and experienced people at this great location in Rotterdam. Looking forward to our five year journey to improve interoperability of health data and ultimately improve patient care.” – Peter Rijnbeek
EHDEN is a public-private partnership launched under the Innovative Medicines Initiative programme (IMI, https://www.imi.europa.eu/). The pre-competitive aspect of IMI projects was very visible during the kick-off meeting as partners from different academic institutions, SMEs and pharmaceutical companies as well as representatives from other IMI projects came together to discuss how we will ensure that EHDEN lives up to its promises.
The first day of the meeting started with an introduction to the overall EHDEN approach and strategy by the project's coordinators Peter Rijnbeek (Assistant professor, Erasmus MC (NL) and Academic lead of the IMI2 EHDEN project) and Nigel Hughes (Scientific Director, Janssen Pharmaceutica NV (BE) and EFPIA lead of the IMI2 EHDEN project). Thereafter Oussama Karroum (IMI) explained the wider IMI frameworkand the Big Data for Better Outcomes (BD4BO) programme, within which EHDEN operates. During the remainder of the day, participants were allocated to 1 of the 3 parallel breakout sessions. By having this hands-on time, excellent progress was made on defining the outlines for: (i) the SME and data custodian grant applications procedures, (ii) the initial research use cases which will be performed and (iii) the quid pro quo of the different value propositions for key stakeholders in collaborating with, and mapping real world data. If anything, the energy observed in this breakout session reaffirmed the passion which drives all partners to make EHDEN a success story.
"EHDEN is a unique project and opportunity to facilitate conducting 21st century research with 21st century tools, based on a collaborative community, federated architecture, and common research intents, and it has been tremendous to see the project crew socialising around our goals and aims” – Nigel Hughes
The second day of the meeting began by a report on the OHDSI-EHDEN Study-a-Thon which took place at the University of Oxford (UK) from the 10th to the 14th of December last year. Daniel Prieto-Alhambra (Professor at University of Oxford (UK)), Patrick Ryan (Senior director and Head of Epidemiology Analytics, Janssen (US), Assistant professor at Columbia University Medical Center (US) and Collaborator at Observational Health Data Sciences and Informatics (OHDSI)) and Ross Williams (PhD student, Erasmus MC (NL)) showed the audience the true potential of real world data when they attempted to predict the outcome of a currently running clinical trial. In just 5 days, they started from formulating the research question and defining cohorts, to analysing the results and writing 2 high-impact factor papers (to be submitted)! Over lunch, demos were held on the many tools available to accelerate real-world evidence generation: The EMIF Catalogue, ATLAS, Arachne, Patient-level prediction tools and ETL tools. After lunch, all partners received instructions on their adminstrative obligations by the project management office (WP7), after which all work package leads presented their workplan for the first half of 2019.
- WP1 - Evidence workflow development
- WP2 - Outcome-driven healthcare
- WP3 - Personalized Medicine
- WP4 - Technical Implementation
- WP5 - Data Workflow Implementation and Service Deployment
- WP6 - Outreach and sustainability
By the end of the meeting, all partners had a clearer understanding of our goal and strategy for the initial six to twelve months, and beyond. As EHDEN is often referred to as a flagship project, the expectations are significant. However, we are sure that all partners are passionate about EHDEN’s mission and combined with the collaborative spirit shown during the meeting, there is no doubt that this will support us strongly in reaching our goal of harmonising 100 million patient records, and that we will be able to show how this facilitates more accurate, faster and more reliable evidence generation for the benefit of patients in Europe and beyond.
This project 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.