The curation of an open science community in Europe and sustainability of the EHDEN mission, a startup in the IMI programme
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Description
In episode #5 of the podcast, we meet with Carlos Diaz, CEO of Synapse Research in Spain, a specialist SME managing complex projects in IMI and Horizon 2020 (considered the number one SME), such as EHDEN, and formerly an economist and business administrator. Joining him is Johann Proeve, a biologist by training, who spent 36 years in clinical data management at Bayer Healthcare, and who ran the global data management organisation for 15 years, and who worked within IMI1 EHR4CR, and following retirement came back to Bayer to work in EHDEN. He is also the CSO of Cyntegrity, a risk-based quality management company. Carlos and Johann co-lead EHDEN's Work Package 6 focusing on value propositions, community, stakeholder engagement, education and training, and sustainability. Both Carlos and Johann initially explore the emerging community of multiple entities and organisations in Europe, driven by the adoption of the OMOP common data model (CDM), and now having also worked on evidence generation based on this foundation. The coordination of the Data Partner and SME community via a Community Manager has been critical to this evolution, recognising the specific nuances of Europe, though work remains to be done in terms of being self actualising as a community from local to regional, with a levelling up in terms of geographical through to chronic to rare diseases representation. The discussion then explores the thinking behind the startup mentality ('running the project like a business'), especially as EHDEN now has two years left in the IMI phase, focusing on value streams and the establishment of the EHDEN not-for-profit entity, but most importantly the incentives driving everyone's involvement and the need to develop relationships. Lastly, we focus on a thought experiment considering what success would look like two years after the IMI phase ends, in 2026, centering on a revolution in real world research within a self actualised, open science community. The views expressed by the participants are personal and not necessarily reflective of their organisations.
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