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 empoweredactors

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 theircondition, background or nationality, have afundamental and legitimate human right of access toinformation about their health, medical conditions andthe 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 PrinciplesModel on DiabetesAccess 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

• http://ec.europa.eu/health-eu• 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 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.

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

@@www.eu-patient.eu

info@eu-patient.eu

Thank you!

A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE