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EUPATI Report from July's event & expert programme

The concept of “Patient-centeredness” is omnipresent today, to the point where patient engagement has been quoted as the ‘blockbuster drug of the century’. The European Patient’s Academy on Therapeutic Innovation (EUPATI) hosted a workshop on 23 July in Berlin, Germany, to discuss concrete actions that support meaningful patient involvement in Research and Development (R&D).Much still needs to be done to involve patients in a systematic and meaningful way in R&D. This conclusion emerged from the three breakout sessions of the event designed to explore the benefits of such involvement, the current barriers that exist and the relevant compliance codes and frameworks that need to be updated to enable it.

The participants identified key activities that need to be followed up: 

  • Develop a framework for patient involvement with one set of guidelines for all parties (including regulators). 
  • Make the case for how patient involvement benefits research with a working group communicating concrete facts. 
  • Outline the steps needed to involve patients and advocates with a simple ‘how to’ checklist.
  • Create key performance indicators for patient involvement with measures that cover quality, quantity and speed.

A number of volunteers will take these actions forward over the coming months to contribute making patient centricity in R&D a reality. “Patients have a lot to contribute, and the European Patients' Academy is working hard to empower them to do so” said EUPATI Director Jan Geissler.

The EUPATI Expert Training Course begins in early October for over 14 months with online and face-to-face education modules. “It will be an exciting and unique opportunity offering patient advocates expert-level training in medicines research and development, specifically tailored for them” said Nicola Bedlington, EPF Executive Director and Coordinator of EUPATI.

It is essential that patient advocates become qualified partners in medicines research and development to improve patient outcomes. The 55 applicants from 21 countries who were selected to follow the training will become significant actors in future research and development.

For more information, please contact EPF Executive Director Nicola Bedlington at nicola.bedlington@eu-patient.eu.