The European Patients’ Academy on Therapeutic Innovation Jan Geissler EUPATI Director, Germany
Window of opportunity inaccelerating medicines R&D Great challenges ahead: Personalized medicine, translational medicine, increasing development cost, pressure on healthcare budgets The regulatory and innovation environment is ready to involve patients to effectively meet unmet needs
Unmet need of patient & public,great willingness to contribute! Patients… • seek up-to-date, credible, understandable information about innovation in treatments • are largely unaware about clinical trials, translational research, personalized medicine, pharmacoeconomics, their key role Patient advocates… • like to advise on protocol design, informed consent, ethical review, marketing authorization, value assessment, health policy • lack the education and training required to participate as a partner in drug research and development FP7-funded PatientPartner project demonstrated a clear need & willingness to contribute
A paradigm shift in empoweringpatients on medicines R&D Launched Feb 2012, runs for 5 years, 29 consortium members, IMI-funded will develop and disseminate objective, credible, correct and up-to-date public knowledge about medicines R&D
EUPATI: European Patients Academyon Therapeutic InnovationIMI-funded EUPATI will develop and disseminate accessible, well-structured and user-friendly information and education on medicines R&D build competencies among well informed patients and the public about pharmaceutical R&D build expert capacity in patient advocates create the leading public library on patient information in seven most common languages under public licensing establish a widely used, sustainable infrastructure for objective, credible, correct and up-to-date knowledge facilitate patient involvement in R&D to support industry, academia, authorities and ethics committees
Strong Consortium Led by pan-EU patient umbrella organisations Strong impetus from key academic partners and non-profit organisations Key industry expertise in medicines R&D
Ensuring Objectivity, Transparencyand Independence are vital Advisory bodies committed to ensure independence, transparency, good governance • EMA, Swissmedic, MHRA, BfArM • Key experts in bioethics, genetics, HTA, economics, evidence based med, patient advocacy • Ethics Panel Ethical Framework, Code of Conduct: • Ground rules for anonymity, confidentiality, informed consent, social research, ethical review, professional integrity, publication ethics, transparency, independence and trust.
EUPATI in 2016:What we will have achieved EUPATI platform fully loaded with training, education, information material in multiple languages EUPATI Patient Ambassador, Patient Journalist, Train-the-Trainer Programme in place Good practice guideline for patient involvement released Annual Conferences and at least 5 Regional Workshops performed. Expert network established.
Get to know us! Web: www.patientsacademy.eu Twitter: @eupatients as well as: