A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE

The European Patients’ Forum Information to Patients – the Fundamental Right to Know “Are patients sufficiently informed nowadays? Rights and ethics” 10 October 2007, Ljubljana Roxana Radulescu

10 October 2007, Ljubljana Background on EPF An informed patient - An asset to society EU developments on Information to Patients - what patients want My Presentation

10 October 2007, Ljubljana Image of Patients A major move from passive recipients to……… Informed and empowered actors

10 October 2007, Ljubljana Why we exist High quality, patient centred, equitable health care in Europe Provide a strong patients’ voice in European healthcare debate Umbrella organisation, Brussels - 27 European and national patients’ organisations.

10 October 2007, Ljubljana 1.EQUAL ACCESS FOR PATIENTS 2.PATIENT INVOLVEMENT 3.PATIENTS’ PERSPECTIVE 4.SUSTAINABLE PATIENT ORGANISATIONS 5.PATIENT SOLIDARITY 5 Strategic Goals

10 October 2007, Ljubljana To be democratic, inclusive and independent To defend the rights of our patient constituency To be professional and transparent To build consensus and solidarity Our responsibility and mandate

10 October 2007, Ljubljana Informed patients: –Informed choice and better disease management –Better concordance - how to take medicine,know if there is a problem, seek advice –Effective and rational use of therapies –Better quality of life. Informed patients - Asset to society What patients want

10 October 2007, Ljubljana THE FUNDAMENTAL RIGHT TO KNOW “EPF believes that ALL patients, no matter their condition, background or nationality, have a fundamental and legitimate human right of access to information about their health, medical conditions and the availability of treatments including knowledge of the best available management of their disease. It is a question of solidarity, equity and patients’ rights.” Information to Patients

10 October 2007, Ljubljana Commission’s Report on Information to Patients on Medicinal Products EPF - Good overview - but nothing new Revised Report –will include minor factual changes Legislative proposal to EP and Council end 2008, based on quality principles (Art 88A) Commission Report

10 October 2007, Ljubljana Current information sources fall far short Information varies from country to country The fundamental importance of the Patient/ Doctor Relationship Need for Information from different sources Key role for patients’ organisations Importance of holistic approach Health literacy - Information to empowerment What patients think (1)

10 October 2007, Ljubljana No to direct advertising - information not marketing A role for industry - non promotional; Information for those patients actively seeking it Transparent and effective Public Private Partnerships Importance of a regulatory system What patients think (2)

10 October 2007, Ljubljana EPF is the patients’ representative Key strand - information to patients Responses to this work - views of not only our members but also patient group allies Pharmaceutical Forum

10 October 2007, Ljubljana Composed of Member States and Stakeholders Focus: Quality Principles Model on Diabetes Access to information in certain settings (eg hospitals, pharmacies) Tool Box (vulnerable groups) Information to Patients- Working Group

10 October 2007, Ljubljana EPF Response: Quality principles - important backdrop to current and future EU level developments Need for a context Model of information - clarity of language More patient oriented Quality Principles

10 October 2007, Ljubljana EPF Response: Missed opportunity to apply quality principles Not patient centred, holistic, inclusive EPF list of contents for a comprehensive information model Poor quality example but illustrates the value of a model Diabetes Model

10 October 2007, Ljubljana An important source of information yet only 50% of EU citizens have access to Internet. Many sites are in English only. A quality label for approved sites. Never the sole info source Printed material important Internet

10 October 2007, Ljubljana Important potential contribution - patient mobility Multilingual EPF is on the EU Health Portal Editorial Board - patients’ perspective Health-EU Portal

10 October 2007, Ljubljana 26 June High Level Ministerial Forum and Conclusions Steering Group Meeting 20 September agreed Work Plan based on Conclusions of the High Level Ministerial Forum. Current State of Play

10 October 2007, Ljubljana Key elements: Finalise tool box Networking Platform Methodology for use of principles Feasibility study re. validating information Pilot partnerships at national level : fact sheets Virtual Network on Information to patients Information to Patients - Work Plan

10 October 2007, Ljubljana Trust - all players in the Pharmaceutical Forum Engagement of the wider NGO Health Community : Joint Statement Shift from EU level to national cooperation. Cooperation with Partners

10 October 2007, Ljubljana Information to Patients : the fundamental right to know An informed patient is an asset to society Information not marketing Urgency of the issue: equity and patients’ rights Partnership is crucial. Conclusions

10 October 2007, Ljubljana Thank you!

A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE