From Awareness to Partnership: Building Bridges Between Academia & Patient Communities

As part of the EUPATI Academia/NGO Cluster’s webinars on patient involvement in academic research, this first webinar looked at how research organisations turn patient involvement from a good intention into everyday practice. Recognising the value of patient involvement is one thing; building the structures that make it real is another. EUPATI was joined by three partner organisations from the academic and non-profit research community: EATRIS, ECRIN and INNODIA.

Eliis Keidong and Dunja Urbancic (EATRIS), Christine Kubiak and Fanni-Laura Mäntylä (ECRIN) and Mónica Queipo (INNODIA) introduced their organisations and their role in the European research landscape. They then explained how patient involvement has been built into the way each organisation works: how it is defined internally, how the framework for working with patients was developed and why, and how collaboration with patients and patient communities is organised and sustained in day-to-day practice.

Together, the contributions offered a comparative view of how research infrastructures and non-profit organisations turn commitment into practice, including the choices made along the way. The webinar was relevant for researchers, research managers, patient advocates and anyone working at the interface between academia and patient communities who is looking for practical approaches to building lasting partnerships.