European Patients’ Academy on Therapeutic Innovation:Shifting paradigms in empowering     patients on medical R&DBelgian A...
Unmet needs: There is no„magic bullet“ for most patients    “Success stories” available only to     small numbers of rare...
Patients have unmet needs --window of opportunity in R&DNew opportunities: Molecular targets/pathways         Window of ...
Overcoming public scrutinyon research   Lack of public confidence in    research leads to     • lack of trial recruitment...
Patient advocates’ key role inbuilding new environment for R&D   Patient organisations have unique insights    in „real l...
Unmet need of patient & public,and great willingness to contribute!   Patients…     • seek up-to-date, credible, understa...
EUPATI: A paradigm shift ininvolving patients in medicines R&D   Great individual initiatives to train patient    advocat...
EUPATI: Paradigm shift inempowering patients on med R&D   Launched Feb ’12, runs for 5 years,    29 consortium members,  ...
EUPATI Audiences: advocacyleaders and the lay public                          100     EUPATI Certificate   patient     Tra...
Areas covered by EUPATI1.   Medicines development process     from research to approval2.   Personalized, predictive medic...
Multi-stakeholder consortium,transparently governed   Led by European Patients’ Forum &    pan-EU patient organisations ...
EUPATI in 2016:What EUPATI will have achieved    EUPATI platform fully loaded with training, education,     information m...
Get to know us!                  Jan Geissler                  EUPATI Director                  jan@patientsacademy.eu    ...
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European Patients’ Academy on Therapeutic Innovation: Shifting paradigms in empowering patients on medical R&D - Jan Geissler

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"European Patients’ Academy on Therapeutic Innovation: Shifting paradigms in empowering patients on medical R&D": Presentation by Jan Geissler (Twitter @jangeissler) at the Belgian Association of Clinical Research Professionals (ACRP.be) meeting on 25 Oct 2012

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European Patients’ Academy on Therapeutic Innovation: Shifting paradigms in empowering patients on medical R&D - Jan Geissler

  1. 1. European Patients’ Academy on Therapeutic Innovation:Shifting paradigms in empowering patients on medical R&DBelgian Association of Clinical Research Professionals Meeting, 25 Oct 2012 Jan Geissler EUPATI Director
  2. 2. Unmet needs: There is no„magic bullet“ for most patients “Success stories” available only to small numbers of rare cancers, rare diseases, patients at “best age” Patients need innovation! 5-year survival in cancer (USA, 2008)National Cancer Institute (2008) Source: RareCare (2012)
  3. 3. Patients have unmet needs --window of opportunity in R&DNew opportunities: Molecular targets/pathways Window of Genome sequencing opportunity Translational research  new “Personalized” medicine relationship between Companion diagnostics researchers, Need for post-marketing data regulators, HTA, QoL, endpoints, comparators industry, Healthcare budgets, drug pricing patients
  4. 4. 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 needed
  5. 5. Patient advocates’ key role inbuilding new environment for R&D 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 PatientPartner FP7 Project (2010), www.patientpartner-europe.eu
  6. 6. Unmet need of patient & public,and 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, health economics, their 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
  7. 7. EUPATI: A paradigm shift ininvolving patients in medicines R&D Great individual initiatives to train patient advocates - by patient organisations, academia, industry, healthcare professionals Complemented by: The European Patients’ Academy on Therapeutic Innovation
  8. 8. EUPATI: Paradigm shift inempowering patients on med R&D Launched Feb ’12, runs for 5 years, 29 consortium members, PPP of EU Commission and EFPIA will develop and disseminate objective, credible, correct and up-to-date public knowledge about medicines R&D will build competencies & expert capacity among patients & public will facilitate patient involvement in R&D to support industry, academia, authorities and ethics committees
  9. 9. EUPATI Audiences: advocacyleaders and the lay public 100 EUPATI Certificate patient Training Programme advocates English French 12.000 German EUPATI Educational patient Spanish Toolbox advocates Polish Italian Russian EUPATI 100.000 Internet Library individuals
  10. 10. Areas covered by EUPATI1. Medicines development process from research to approval2. Personalized, predictive medicine3. Drug safety, risk/benefit assessment of medicines4. Pharmaco-economics, health economics and health technology assessment5. Design & objectives of clinical trials (& roles of stakeholders) …and NOT:6. Patients roles & responsibilities in develop indication- medicines development or therapy-specific information!
  11. 11. Multi-stakeholder consortium,transparently governed Led by European Patients’ Forum & pan-EU patient organisations Strong impetus from key academic partners and non-profit organisations Industry expertise in medicines R&D Advisory bodies help ensuring independence, transparency, good governance • EMA, Swissmedic, MHRA, BfArM • Key experts in bioethics, genetics, HTA, economics, evidence based med, patient advocacy • Ethics Panel
  12. 12. EUPATI in 2016:What EUPATI 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.
  13. 13. Get to know us! Jan Geissler EUPATI Director jan@patientsacademy.eu Web: www.patientsacademy.eu Twitter: @eupatients as well as:

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