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What is the European Patients Forum - Nicola Bedlington

What is the European Patients Forum - Nicola Bedlington

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Categories:Types, Research
Published by: Cittadinanzattiva onlus on Apr 11, 2011
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European Patients Rights Day 11,12 April 2011

EPF ²who 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

Major policy themes
‡ Patients Rights in Cross Border Healthcare

‡ Patient Safety ‡ Pharma Package ‡ Health Literacy ‡ eHealth ‡ Clinical Trials ‡ Medical Devices ‡ Health Technology Assessment

Examples -Policy success
‡ Draft Directive on Pharmacovigilance

‡ Draft Directive on information to the General Public on Prescription Medicines


‡ New Joint Action on patient safety and quality of care,


Making it work ² national advocacy
‡ Reinforcing national patient platforms advocacy and campaign work using policy advances at EU level e.g Implementaton of the Animal Testing Directive e.g Implementation of the Pharmacivigilance Legislation Direct Patient reporting e.g Ensuring provisions of Directive on Patients Rights in Cross Border Healthcare ( National Contact Points, Stakeholders involvement in HTA) are upheld e.g Coordinated work on Health inequalities and information to patients, health literacy ‡ Stronger collaboration with Health Stakeholder Allies At national level eg Romania

Patient Involvement- Pre-requisite Involvement- PreVALUE + 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 ‡ EPF representation in major EU level health Forums, Consultative Committees and Working Groups doubled in the last year

VALUE + tools
Model of Patient Involvement Toolkit for patients organisations Handbook for project coordinators, leaders and promoters Policy Recommendations Literature review on patient involvement Database on EU health-related projects Directory of patient organisations in EU Overview of legislation on patients rights

Their Impact
I ‡ In a policy environment
‡ E.g Innovation Partnership on Healthy and active ageing

‡ In a programme environment

‡ At individual research project level

‡ Capacity building level
‡ Tools linked to Health Technology Assesment, Clinical Trials, Structural Funds, eHealth

Patients Perspective
‡ EPF Manifesto 150 Million Reasons to act campaignoutreach 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 ‡ Strong input in European Medicines Agency, ‡ Alliance building with health professionals, other Health stakeholders

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, health and social policy ‡ Youth Strategy ‡ ‡ ‡ ‡ ‡ ‡

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 Health Literacy ‡ Meeting the needs and rights of older patients Polish EU Presidency Conference second semester ‡ Policy Advisory Group and Patient Evidence Base Workshops

Next EU Programming Period Major focus patients rights and meaningful patient iinvolvement ‡ 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

Key messages
‡ We all make a measurable difference ‡ Our strengths - our members expertise, experience innovation and solidarity - our collective evidence based perspective - our commitment to partnership - Embedding Patents Rights Meaningful Patient Involvement in the EU health and social policy environment

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