BLOG – Data Saves Lives/EHDEN Patient Registries Bootcamp

On 5-6 December 2023, I had the pleasure to be part of the third Data Saves Lives Ambassador Training Bootcamp in Brussels. EHDEN has been working closely with the European Patients’ Forum (EPF), an EHDEN Consortium member since the EHDEN project began in 2018, and this was an excellent opportunity to broaden our collaboration to support the Data Saves Lives initiative.

The purpose of this Bootcamp was to give the ten attending patient groups from eight countries a better understanding of the key benefits, legislation and practicalities of patient-led registries. We also wanted to make clear the potential role of patient groups in influencing the design and use of registries to improve the lives of their communities.

From EHDEN’s perspective in particular, we were keen to raise awareness about the paradigm shift that EHDEN is helping to foster thanks to the large-scale federated network of data sources that we have formed. Over the course of the Bootcamp it was apparent to all  that building an effective patient registry is a complex process that requires a team effort to secure funding and resources.

In that context, it was valuable to explain the importance of improving interoperability data as done in EHDEN. Similarly, it was made clear that the use of the OMOP-Common Data Model and Standardised Vocabularies can improve the collaboration for registries and enable collaborations at scale.

The Bootcamp also did a very nice job of bringing together a well-rounded group of experts who provided useful insights into legal perspectives/GDPR; the challenges, practicalities and key learnings of building registries. We wrapped up Day 2 with a session that gave the attendees an opportunity to reflect on the Bootcamp and start to formulate their action plans.

It was very gratifying to be part of this initiative and to receive the feedback that attendees’ awareness of EHDEN and the importance of standardising data to the OMOP-CDM was significantly improved. We look forward to further initiatives with EPF and Data Saves Lives and helping patient groups on topics such as the quality and accessibility of real world data. This collaboration is important to ultimately improve patient treatment and outcomes.

More about this Bootcamp is also available on the Data Saves Lives blog post.

Peter Rijnbeek

Prof. of Medical Informatics & Head of the Dept. of Medical Informatics,

Erasmus University Medical Center, the Netherlands;

EHDEN Project Coordinator.