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 the whole research cycle, with emphasis on collaboration and sharing.
One of EHDEN’s key objectives is in fact the creation of an open science community in Europe that supports methods, tools, and skills that promote collaborative research, as well as advocates for the acceptance of RWD in generating RWE.
After five Data Partner open calls, and three SME open calls, to date, EHDEN has made significant strides in contributing to the growth of such a community, which now counts more than 700 members from a diverse range of organisations from twenty-eight countries across the region. One of the most salient features throughout the entire process is the ever-increasing member interest in advancing data mapping, and collaboration in network studies. Regular interactions with a community of this size require ongoing coordination and communication.
With 140 Data Partners, and 47 SMEs now, and two more Data Partner final calls and an SME call open right now, we could potentially be working with ~200 Data Partners and ~55-60 SMEs across 28-30 countries, which would be a remarkable achievement.
From the EHDEN perspective, a dedicated person (‘Community Manager’) was appointed in order to ensure closer follow-up of the work that Data Partners and SMEs are undertaking. The Community Manager initiates the relationship with new Data Partners by walking them through the process of preparing their workplan and signing a sub-grant agreement. This process can sometimes encounter internal hurdles within Data Partner institutions, especially as several departments are expected to contribute, namely, IT teams for setting up the infrastructure, data scientists who will perform the ETL, clinicians to ensure that the data mapping is clinically accurate, and legal teams to review agreements. In addition, each Data Partner is expected to subcontract an EHDEN-certified SME to provide technical support and conduct the ETL with them.
Furthermore, once the projects effectively start, the Community Manager is also in charge of tracking progress to ensure Data Partner milestones are being completed. These milestones are subsequently reviewed by the EHDEN technical team, which is composed of subject matter experts, and provides feedback to the Data Partners and SMEs, as needed.
Not surprisingly, during the pandemic, it’s the reliance on phone calls and Teams’ meetings that have proved invaluable to discuss progress to date, and more importantly, to understand the hurdles experienced, thereby strengthening the relationships and strong collaboration that are so key to everyone’s success. To build further on this foundation, the entire community is very keen to resume pre-COVID-19 travels and face-to-face meetings as soon as possible, as this level of interaction is the best approach for community-building and gaining trust.
We also initiated bi-monthly Community Calls, led by the Community Manager, which have been a forum for Data Partners, SMEs and EHDEN colleagues to share experiences, discuss progress and plans for collaborative studies. These meetings, with approximately 100 participants, have been very insightful and have also provided very useful legacy educational material for the wider community.
The aforementioned process will not cease after the finalisation of the mapping process, and EHDEN is currently developing a programme for evidence generation, based on the success of the first two E-THONs (evidence-a-thons) that were organised in July 2021 and January 2022 to evaluate recently mapped Data Partners ETL, and initiate study and methods training (more here).
We at EHDEN are proud of the community being created thus far, but this is just the beginning. Expansion will continue over the course of this year and most importantly, more and more data will be standardised, more research and analyses can then be conducted in collaboration with Data Partners, and the transformational potential of RWD/RWE will translate into improved patient treatments and outcomes. The EHDEN Community Manager plays an integral role in ensuring this success.
EHDEN Community Manager and Senior Project Manager,
SYNAPSE Research Management Partners