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European Patients' Academy - Presentation at IMI Patient Focus Meeting on 12 June 2013


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European Patients' Academy - Presentation at IMI Patient Focus Meeting on 12 June 2013, presented by Jan Geissler (@jangeissler), Director EUPATI (@EUPATIents) at the IMI's "Patient Focus" meeting, convening patient leaders from across Europe

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European Patients' Academy - Presentation at IMI Patient Focus Meeting on 12 June 2013

  1. 1. Jan Geissler – EUPATI Director – jan@patientsacademy.euIMI Patient Focus Meeting, 12 June 2013European Patients’ Academyon Therapeutic InnovationThe project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composedof financial contribution from the European Unions Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.
  2. 2. Medical landscape is changingat a fast paceInnovation transforms the lives ofpatients with serious, lifelong conditions: Molecular targets/pathways Genome sequencing, Translational research Personalized medicine• Small trial populations• Biomarkers, companion diagnostics Need for post-marketing data Health Technology Assessment,QoL, endpoints, comparators BUT long term pressure on health budgets– here to stayWindow ofopportunity trial design relationshipbetweenresearchers,regulators,industry,patients2
  3. 3. PublicResearch EthicsCommitteesCompetentauthoritiesPolicy makersHTA agencies& committeesResearch subjectInfo providerAdvisorReviewerCo-researcherDriving forceClinicalResearchFor patient-centric medicines R&D,we need more trained patient advocatesTrial protocoldesign, informedconsent, ethicalreview, marketingauthorization, valueassessment, health policy
  4. 4. The Patients’ Academy: Paradigm shift inempowering patients on medicines R&D Launched Feb ’12, runs for 5 years,30 consortium members,Funded by IMI JU will develop and disseminateobjective, credible,correct and up-to-date publicknowledge about medicinesR&D will build competencies& expert capacity among patients & public will facilitate patient involvement in R&D to collaborate in academicresearch, industry research, authorities and ethics committees
  5. 5. Areas covered bythe European Patients’ AcademyExample: EUPATI Face2Face Training Courses1. Discovery of Medicines & Planning of Medicines Development2. Non-Clinical Testing and Pharmaceutical Development3. Exploratory and Confirmatory Clinical Development4. Clinical Trials5. Regulatory Affairs, Medicinal product Safety, Pharmacovigilanceand Pharmaco-epidemiology6. Health Technology Assessment and theeconomics…and NOT:develop indication-or therapy-specificinformation!
  6. 6. Reflecting European diversity:7 languages, 12 countries 7 most frequently spoken languages:English, French, German, Spanish, Polish,Italian, Russian Serving 12 European countriesATBECHDEESFRITIELUMTPLUK
  7. 7. EUPATI Internet LibraryEUPATI Educational ToolboxEUPATI Training ProgrammeTo bring this to life, EUPATI developseducation targeted at different levels100“expert”patientadvocates12.000patientadvocates100.000individuals
  8. 8. Project led by 4 key pan-Europeanpatient associations◦ EUPATI Project Coordination◦ >50 umbrella patient organisations.◦ Linking national and regional patientalliances◦ >550 rare disease organisations in>45 countries◦ >100 members in over 30 countriesAdditionalpartners in otherpatientorganisationsand "membersof members"via"EUPATINetwork"
  9. 9.  Led by pan-EU patient umbrellagroups. EPF coordinates. Strong impetus from key academicpartners and research organisations Industry expertise in medicines R&D,IT, capacity building Advisory bodies & codes committed toensure independence and goodgovernance• EMA, Swissmedic, MHRA, BfArM• Bioethics, genetics, HTA, economics, evidencebased med., patient advocacy• Ethics PanelWorking in partnershipwith strong governance
  10. 10. EUPATI – achievements by end of 2016Launched in 2012. First trainings in 2014. All languages in 2016.By 2017 we will have achieved: EUPATI platform fully loaded with training, education, informationmaterial in multiple languages EUPATI Patient Ambassador, Patient Journalist,Train-the-Trainer Programme in place Good practice guideline for patient involvement released Annual Conferences and Regional Workshops performed.Expert network established.
  11. 11. To address unmet needs and makeresearch patient-centric,more patient advocates needto be involved as partners in R&D.EUPATI will helpto make that happen.
  12. 12. Thank you!Web:www.patientsacademy.euTwitter: @eupatientsas well as: