A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE

1. EPF Regional Advocacy Seminar Budapest, 25 October 2010 A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE

2. Who are we ? • VISION – high quality, patient-centred equitable healthcare throughout the EU • MISSION – to present a strong and united patients’ voice 150 MILLION PATIENTS, almost 50 members • GOALS • Equal Access • Patient Involvement • Patients’ perspective • Sustainable patient organisations • Patient Unity

3. Objectives • Building capacity • Strengthening our policy impact • Harnessing patients’ own evidence • Extending our membership • Developing communications and partnerships • Diversifying the funding base • CONSOLIDATION AND GROWTH • ECONOMIC and SOCIAL CRISIS

4. Achievements 2009/2010 EQUAL ACCESS FOR PATIENTS • EPF Seminar on Health Technology Assessment and Annual General Meeting • Major policy themes • Patients Rights in Cross Border Health Care • Patient Safety • Pharma Package • E-health / Telemedicine • Clinical Trials • Medical Devices

5. Achievements 2009/2010 PATIENT INVOLVEMENT • “VALUE +” on the meaningful involvement of patients in EU health projects • 3 core deliverables widely distributed, translations • Landmark conference under the Swedish Presidency, Gothenburg December 2010 • Ongoing success – DG RESEARCH, IMI • EPF representation in major EU level health Forums, Consultative Committees and Working Groups doubled in the last year

6. Achievements 2009/2010 PATIENT INVOLVEMENT • Leadership of a parallel session on Cohesion Policy / Structural Funds at the Open Health Forum, June 2010 • Positions EPF at heart of campaign work to ensure Health ( + patients) is a key feature in current and future programming • Enhanced credibility – SANCO and fellow stakeholders • Concrete application – Value+ products / resource for patients

7. Achievements 2009/2010 PATIENTS’ PERSPECTIVE • EPF Manifesto “150 Million Reasons to act” campaign- outreach work with/by our members • EPF – speaker ,chair or moderator in over 50 EU health meetings each year - ensuring or safeguarding the patients’ perspective • Active support 120 MEPs - all EP Groupings - close relationship with key rapporteurs on main health dossiers • Continued strong input in European Medicines Agency • Continued alliance building with health professionals and other health stakeholders

8. Achievements 2009/10 SUSTAINABLE PATIENTS ORGANISATIONS • Significant political work on core funding from the European Commission • Diversification is key – new EU projects, new corporate partners – pharma, MD, IT, Foundation funding • Membership Guide and Review of EPF by members • Regional Advocacy Seminar in Sofia – 50 patient leaders from Bulgaria and neighbouring countries • This Regional Advocacy Seminar focus – young patients – development of a youth strategy

9. Achievements 2009/10 PATIENT UNITY • Extension of the membership to 44 Members – 6 more expressions of interest • Focused work where no national platform e.g Portugal • Policy Advisory Group – operational – key resource • Strong relationship with allies - European Cancer Patient Coalition, IAPO

10. Communications • New Website Launch – February 2010 • Accessibility – Approved by HON • Content Management System • Social Media Strategy • ePlatform for young patient leaders ? • YouTube – in house and external videos • New Look EPF Mailing – based on members’ review

11. LOOKING FORWARD 2011 and beyond

12. Maintaining Momentum • Patients Rights in Cross Border Healthcare • Next Milestone – Belgian Presidency Event 1 December, eve of Second EP Reading • Pharmaceutical Package • Information to patients remains controversial dossier -some inroads, • Pharmacovigilance and anti-counterfeiting-adoption imminent – need to explore next steps – PI in transposition • Clinical Trials Directive • Health Technology Assessment • eHealth • Health Inequalities – Health Literacy

13. New Policy Dossiers • Needs and rights of Older Patients • Adherence to medicines / concordance • Personalized Medicines • Medical Devices • Non – Discrimination legislation • Bridging prevention and chronic disease management • Moving forward with conclusions from this meeting - Youth strategy NEW!

14. New Project Dossiers • eHealth Governance and Thematic Network • Chain of Trust – building confidence and acceptance in telemedicine solutions • Interquality – Maintaing quality and sustainability of health care systems • Joint Action on Patient Safety and Quality of Care • IMI project consortium – education and communciation of pharmaceutical research to patients • FP7 project on communicating health research to patients NEW!

15. Milestones in 2011 • Annual General Meeting (Spring) capacity building and open space for members’ networking, Brussels • Regional Advocacy Seminar in Romania – Focus – collaboration with Health care Professionals • Meeting the needs of older patients – Polish EU Presidency Conference – second semester • Policy Advisory Group and Patient Evidence Base Workshops

16. 2014-2020 Next EU Programming Period Major focus – meaningful patient involvement • New EU Public Health Programme • 8th Framework Programme on Research and Development ( health component) • Cohesion Policy and Structural Funds • Health in All Policies 2011 – development of campaign strategy and partnerships

17. Key messages • EPF is making a measurable difference • Our strengths • our members’ expertise, experience and solidarity • our uniquely patients’ perspective • our commitment to partnership • We value your participation in this seminar and look forward to an ongoing collaboration • The young patient’s voice in EPF Forward Moving Together