We would like to share this fantastic learning opportunity from EHDEN and EPF, I hope this will be of interest to many of you.

Launch of EHDEN Academy Patient/Patient Group Course on Real World Data, Evidence & EHDEN

27th September 2021

This series of three introductory modules was designed by the European Patients Forum (EPF) and EHDEN colleagues because several of the key concepts central to the EHDEN (European Health Data & Evidence Network) project can be technical in nature, and challenging to understand for non-experts, particularly patients and citizens.


This free course has been designed to provide non-experts with the knowledge they need to better understand the importance of real world data, how it’s protected, and the vital role they can play in the healthcare ecosystem and health research.


The first module is a brief 6 minute course, designed to familiarise participants with the basics of health data in terms of how it’s created, shared and analysed.

In this first course, they will learn:

·       What is real world data?

·       What is real world evidence?

·       And what is a real world use case?

A second and third module are being developed, and will explore the methods used to conduct research with health data, and the technical networks and architectures involved.

Gözde Susuzlu, Project Coordinator, EPF, commented, “The digital transformation in health is here – for this system-wide transformation to bring real value, it must be co-developed with patients and reflect their priorities. However, a critical challenge to achieving this is equipping patients and patient organisations with optimal digital literacy to engage meaningfully in this transformation, and understand initiatives like the EHDEN project.” Gözde added, “we are very pleased to have worked together with our EHDEN Academy colleagues, and launch this free resource, the first of many!”

“We are really pleased and excited to see this course, the first for non-experts, commencing in the EHDEN Academy,” stated Nigel Hughes, EHDEN Project Lead, EHDEN Academy Director, and Director, Epidemiology, Janssen R&D, “and it has been an excellent contribution between EPF and the Academy. It’s critical that we ensure expanded literacy for all, including the public and patients, with regards to how to programmes like EHDEN work and how they contribute to health research at scale.”

To participate in the first module, check out the EHDEN Academy and choose the course after setting up a free account. Do circulate also to those with an interest in the patient community.