EUPATI’s framework on Informing the “health-interested” public about medicines R&D (Jan Geissler)

EUPATI’s framework on Informing the “health-interested” public about medicines R&D (Jan Geissler)

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  Jan Geissler, EUPATIDirector, [email protected] Share your thoughts on Twitter: #EUPATI2014 Informing the “health-interested” public objectively and comprehensively about medicines R&D The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.
• 2.
  Health research &policy is changing at a fast pace Innovation transforms the lives of patients 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 are probably here to stay Window of opportunity  trial design  relationship between researchers, regulators, industry, patients 2
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  Public Research Ethics Committees Competent authorities Policy makers /ResearchPolicy HTA agencies & committees Research subject Info provider Advisor Reviewer Co-researcher Driving force Clinical Research Patients have a key role in all aspects of health-related research Trial protocol design, informed consent, ethical review, marketing authorization, value assessment, health policy
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  European Patients’ Academy:Paradigm shift in empowering patients on medicines R&D  Launched Feb ’12, runs for 5 years, 30 consortium members, Funded by Innovative Medicines Initiative  will develop and disseminate objective, trustworthy, public knowledge about medicines R&D  will generate knowledge and facilitate patient involvement in R&D to collaborate in academic & industry research, authorities and ethics committees  Will address informational needs and help reduce myths and misconceptions.
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  Content production ofobjective, reviewing material is currently in full swing 1. Discovery of Medicines & Planning of Medicine Development 2. Pre-Clinical Testing and Pharmaceutical Development 3. Exploratory and Confirmatory Clinical Development 4. Clinical Trials 5. Regulatory Affairs, Medicinal Product Safety, Pharmacovigilance and Pharmacoepidemiology 6. HTA principles and practices …but NOT: indication- or therapy-specific information! +Patients‘rolesand responsibilities
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  EUPATI Certificate Training Programme forexpert patients We develop education material targeted at different levels 100 patient advocates 12,000 patient advocates 100,000 individuals EUPATI Educational Toolbox for patient advocates EUPATI Internet Library for the health-interested public English French German Spanish Polish Italian Russian
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  EUPATI Certificate Training Programme forexpert patients EUPATI develops education targeted at different levels: Training Courses 100 patient advocates 12.000 patient advocates 100.000 individuals EUPATI Educational Toolbox for patient advocates EUPATI Internet Library for the health-interested public English French German Spanish Polish Italian Russian http://www.patientsacademy.eu/apply by 20 April 2014!
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  EUPATI Certificate Training Programme forexpert patients EUPATI develops education targeted at different levels: Internet library 100 patient advocates 12.000 patient advocates 100.000 individuals EUPATI Educational Toolbox for patient advocates EUPATI Internet Library for the health-interested public English French German Spanish Polish Italian Russian “Internet Library” – How do we reach 100,000 people?
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  Digital reality today:Outreach of Internet outnumbers that of printed material  15 EU countries: all patients have access to online health information, either themselves or through friends and relatives  Patients much more positive about internet than their healthcare practitioners  Source: “EU EuroBarometer Report on Patient Involvement, May 2012”  Offline interviews carried out in 15 EU Member States: Austria (AT), Belgium (BE), Czech Republic (CZ), Finland (FI), France (FR), Germany (DE), Greece (EL), Hungary (HU), Italy (IT), Latvia (LV), Poland (PL), Romania (RO), Spain (ES), Slovakia (SK) and the United Kingdom (UK).
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  The (future) EUPATIweb platform and content is taking shape 10
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  EUPATI is nota consumer brand, and publicly- funded projects do not have (large) marketing budgets We need to focus on citizens that have an inherent interest in health. We can’t afford to address the whole general lay public. Our outreach largely depends on grassroots momentum of the patient community and the establishment of the EUPATI National Platforms
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  ‘Ivory tower’? Weneed your help…  to learn from best practice examples in your organisations when addressing the lay public, especially those wo also have low literacy  to develop a clear and strong way to communicate to patients and carers  to communicate the “added value” of why increasing their knowledge about medicines development is important
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  Join us andshare your expertise with us today!  Sessions 1 & 2: Discussion of Good Practice Examples and how they can influence our strategy to inform the public • EURORDIS • LIF / “FASS” Sweden  Session 3: Your input to EUPATI’s General Public Information Strategy • How to raise interest in medicines development? • What were the success factors in this morning’s good practices examples? what about your own experience? • How to attract people with low literacy?
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  Share your thoughts today on #EUPATI2014 @EUPATIents