In the EHDEN project, sustainability and outreach were inherent in its design in Work Package 6 (WP6) right from the very beginning, which differentiated it from many other IMI projects. We always considered EHDEN to be a start-up within IMI with a post-project future, rather than having a project mentality with a start, middle and … Read more
Open science is playing an increasingly important role in our rapidly changing world. Open science, as defined by the OECD, makes the primary outputs of publicly funded research results – publications and research data – publicly accessible in digital format with no or minimal restriction. It’s also about ensuring the principles of openness extend to … Read more
With the European Health Evidence & Data Network (EHDEN) now in its third year, efforts are more than ever being focused on the second “E” – generating evidence. After its first successful “evidence-a-thon” or e-thon held in July 2021, a second e-thon with five EHDEN Data Partners (DPs) – CPRD, ULSM, FIIBAP, MEDAMAN and IU … Read more
We at EHDEN hope that you had a recuperative break at the end of 2021, start of 2022, but of course this is well in the rear view mirror as we are already close to the end of January. The project is already of course well immersed in our plans for the coming year, in … Read more
No one is big enough alone to master the complex future. Curious minds could help here in learning from others and building on accomplished work. It seems that even politicians and decision makers are sharing the same mindset: bringing in more cohesion and bridging different aspirations together is the efficient way forward. Ecosystems and collaboration are the keys for sustainable future despite of the differences.
No one is big enough alone to master the complex future. Curious minds could help here in learning from others and building on accomplished work. It seems that even politicians and decision makers are sharing the same mindset: bringing in more cohesion and bridging different aspirations together is the efficient way forward. Ecosystems and collaboration are the keys for sustainable future despite of the differences.
No one is big enough alone to master the complex future. Curious minds could help here in learning from others and building on accomplished work. It seems that even politicians and decision makers are sharing the same mindset: bringing in more cohesion and bridging different aspirations together is the efficient way forward. Ecosystems and collaboration are the keys for sustainable future despite of the differences.
The balance to be met is to keep data closed enough for citizen protection, but open enough for research. This means achieving an ethical balance, avoiding any harm to the patient, while doing societal good in research. The use of federated data networks, such as EHDEN, implicitly protect patient data by keeping data local, behind local firewalls and approval processes, inclusive of local consent requirements, whilst aggregating population-level information, not patient-level data from analysis. This is privacy by design.
To become more of an equal partner, patients and patient groups need to be better versed in health data literacy to be able to meaningfully engage and contribute to shaping discussions, and the course of RWD/RWE.
The overarching goal of the EHDEN project is to foster a thriving European community that better shares health data research, and in particular, to enable federated analyses of real- world healthcare data to ultimately improve patient treatment and outcomes. By definition, this is not something that the project partners can do alone: rather, we see our project as a catalyst to come together and build this with hundreds of other projects and organizations.