A STRONG PATIENTS

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

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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

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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

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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

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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

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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

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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

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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

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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

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LOOKING FORWARD 2011 and beyond
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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

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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!
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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!
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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

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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

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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 patients voice in EPF

Forward

• Moving

• Together