A paradigm shift in public understanding of medical R&DAnders Olauson, President European Patients’ Forum
Unmet needs for most patientswith life-threatening diseases “Success stories” available only to small numbers of rare cancers, rare diseases, other life-threatening conditions, young and very old patients Patients need therapeutic innovation – urgently!Source: RareCare (2012)
Patients need innovation --paradigm shift in drug developmentInnovation turns e.g. cancer,rare diseases upside down: Molecular targets/pathways New approaches Genome sequencing, needed Translational research clinical trial design Personalized medicine trial recruitment • Small trial populations relationship • Biomarkers required between Need for post-marketing data researchers, Health Technology Assessment, regulators, industry, QoL, endpoints, comparators patients Healthcare budgets vs drug pricing
Overcoming public scrutinyon research Lack of public confidence in research leads to • lack of trial recruitment (6-12% of cancer patients take part in research) • delayed generation of meaningful clinical data • slow progress or lack of research • bad image of research in population Objective information to the public & more transparency urgently needed
Patients orgs: key role in buildingnew environment for drugdevelopment Patient organisations have unique insights in „real life“ and „real needs“ of patients: • Gap analysis in research priorities • Clinical trial design • Priority setting in healthcare budgets Driving force • Research policy Co-researcher Reviewer Training required to get expertise Advisor required to contribute to scientific projects Info provider Research subject Source: PatientPartner FP7 Project (2010)
EUPATI: The paradigm shift ininvolving patients in medical R&D Great individual initiatives to train patient advocates - by patient organisations, academia, industry, healthcare professionals, Complemented by: The Patients’ Academy – a paradigm shift in collaborative efforts of all stakeholders to make drug development more effective in Europe Wishing you success!
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