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A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE

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. My Presentation. Background on EPF

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A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE

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  1. A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE

  2. 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

  3. My Presentation • Background on EPF • An informed patient -  An asset to society • EU developments on Information to Patients - what patients want

  4. Image of Patients A major move from passive recipients to……… Informed and empowered actors

  5. 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.

  6. 5 Strategic Goals • EQUAL ACCESS FOR PATIENTS • PATIENT INVOLVEMENT • PATIENTS’ PERSPECTIVE • SUSTAINABLE PATIENT ORGANISATIONS • PATIENT SOLIDARITY

  7. Our responsibility and mandate • To be democratic, inclusive and independent • To defend the rights of our patient constituency • To be professional and transparent • To build consensus and solidarity

  8. What patients want • 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

  9. Information to Patients 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.”

  10. Commission Report • 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)

  11. What patients think (1) • 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

  12. What patients think (2) • 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

  13. Pharmaceutical Forum • 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

  14. Information to Patients- Working Group • 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)

  15. Quality Principles 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

  16. Diabetes Model 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

  17. Internet • 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

  18. Health-EU Portal • http://ec.europa.eu/health-eu • Important potential contribution - patient mobility • Multilingual • EPF is on the EU Health Portal Editorial Board - patients’ perspective

  19. Current State of Play • 26 June 2007 - High Level Ministerial Forum and Conclusions • Steering Group Meeting 20 September 2007 - agreed Work Plan based on Conclusions of the High Level Ministerial Forum.

  20. Information to Patients - Work Plan • 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

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

  22. Conclusions • 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.

  23. Thank you! @ www.eu-patient.eu info@eu-patient.eu

  24. A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE

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