Patients expect that health research arises from real needs of patients with real diseases and the society as a whole that public health issues are served. From EFA perspective these are not in contrast, we take great responsibility in promoting not only care, but also prevention. EFA’s Susanna Palkonen moderated roundtables at a workshop organised by the H2020 Scientific Panel for Health on long term research strategy for the EU. The panels were a mix of national research funding institutes, academia, public advocates and patients and DG Research representatives. The results will feed into the work of the Panel, but it is clear that academia is not yet clear on patient organisations, let alone individual patient experts role or value in research so the work continues!