The European Medicines Agency (EMA) celebrated the 20th anniversary of its Patients and Consumers Working Party (PCWP) at a meeting on 30 June 2026 in Amsterdam, highlighting two decades of integrating patient perspectives into medicines regulation. Executive Director Emer Cooke described the PCWP as a key platform for ensuring patient voices are captured in Agency activities, and stressed that the implementation of the revised EU pharmaceutical legislation offers an opportunity to further strengthen patient-centred regulation, including through patient and healthcare professional representation in the CHMP.
The meeting, co-chaired by Juan Garcia Burgos (EMA) and Marco Greco (PCWP), featured presentations on the history and achievements of the working party. Melanie Carr (EMA) traced the PCWP's journey over 20 years, noting its role in public hearings, patient information initiatives (package leaflets, electronic product information, training materials), support to EMA committees, work on patient experience data, and contributions during the COVID-19 pandemic. François Houÿez (EURORDIS) recalled early interactions with the CPMP (now CHMP), using the HIV/AIDS community as an example to show how patients contributed both lived experience and scientific knowledge, shifting from passive observers to trusted partners. Fernando de Andres Trelles (AEMPS), a former committee member, reflected on how these early meetings challenged regulators' assumptions and led to more pragmatic decision-making. Frits Lekkerkerker, a former CHMP member, described how a 2002 workshop led to a joint working group that overcame initial scepticism among regulators, establishing foundational principles of independence, transparency, and recognition of patients as experts. The PCWP was described as a major milestone that made patient participation an integral part of EMA's work.