A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE

A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE

The European Patients’ Forum

FEPI CONFERENCE PLACING THE PATIENT FIRST

26 September 2007

Patient -centred health care in Europe

FEP MEETING 26 SEPTEMBER 2007

My presentation• Background to EPF • Patient-centred Healthcare in Europe• Moving Forward Together : Empowerment,

Information and Sustainability• Future partnership opportunities between

FEPI and EPF


Image of Patients

A major move from passive recipients, or sanctimonious bystanders, ……to Informed and politicised actors


Why we exist• High quality, patient

centred, equitable health care in Europe

• Provide a strong patients’

voice in European healthcare debates

• Umbrella organisation of currently 27 representative European patients’ organisations and growing.


5 strategic goals

1. EQUAL ACCESS FOR PATIENTS2. PATIENT INVOLVEMENT3. PATIENTS’PERSPECTIVE4. SUSTAINABLE PATIENT

ORGANISATIONS5. PATIENT SOLIDARITY


Consultation

Implementation andreview

Information

Dialogue

Revision

A virtuous circle of influence


• Health related projects and programmes

• Health agencies and think tanks

• Cooperation with health NGOs and other patient organisations

• Cooperation with industry

Patient Involvement at EU level


• Pharmaceutical Forum• Transparency Initiative• Stakeholder

Involvement (Health Democracy)

• Patient Safety• Patient Mobility

Patient Involvement in Practice at EU level


• To be democratic, inclusive and independent

• To defend the rights of their patient constituency

• To be professional and transparent

• To build consensus and Solidarity

Responsibilities of Patients Organisations


EPF SPRING CONFERENCE

• MOVING FORWARD TOGETHER• Empowerment, Information, Sustainability• Important action for EPF to take forward at EU

level in partnership with other stakeholders.


EMPOWERMENT

Active support for the involvementand meaningful participation of patients- EU Health Policy Strategy - Mainstreaming policy and programme work- VALUE + Project on how to involve patient

researchers and patient organisations in EU projects- Patient Involvement - core eligibility criterion


INFORMATION

– Active support for EPF’s continued strategic and valued input, from a patient’s perspective on

The draft report on information to patients presented from the European Commission to the European Parliament and the European Council in April 2007.

The High Level Pharmaceutical Forum’s work on information to patients


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’


Commission Report

• Commission’s Report was circulated for consultation in April - Deadline 30 June

• Very good overview regarding the current state of play - nothing on the way forward

• EPF will be active in presenting the patients’ perspective on this Communication & its follow-up.


EPF’s position

• Better access to high-quality, reliable, and balanced information about diseases, prevention methods, healthcare services, and treatment options, including medicines.

• NO to DTCA• EPF position paper and reference

documents


EPF’s position

• QUALITY INFORMATION SHOULD COME FROM MULTIPLE SOURCES.

• PHARMACEUTICAL COMPANY -a legitimate source of non promotional information on their products

• FOR PATIENTS ACTIVELY SEEKING OUT further information on their conditions and available medicines


Governance issues• How will the information be regulated ?• Three options

• an ex ante validation mechanism wherby national authorities would assess and validate information to patients.

• co-regulation which includes a review process which would be built on ex poste controls including sanctions

• self regulation according to an agreed code of practice.


Pharmaceutical Forum

• EPF IS THE PATIENTS’ REPRESENTATIVE

• KEY STRAND - INFORMATION TO PATIENTS

• RESPONSES TO THIS WORK VIEWS OF NOT ONLY OUR MEMBERS BUT PATIENT GROUP ALLIES


ITP Working Group• Member States and Stakeholders ( MEPs, Health

Professionals, ‘Insurance funds’, industry and the patients)

• Focus Quality PrinciplesITP Model on DiabetesAccess to information in certain settings ( eg

hospitals, pharmacies) Tool Box


Quality Principles• EPF Response

- Quality principles - important backdrop to current and future EU level developments- Need for a context and intro

- QP should be model information - clarity of language - more patient oriented


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 illustrated the value of a model


INTERNET• An important source of information yet only 50% of

EU citizens have access to internet and many sites are in english only.

• A quality label for approved sites • Cannot be perceived a sole info source for patients

but rather in concert with other info resources


SUSTAINABILITY

• Commitment to, and active support for, EPF’s drive towards

• a patient-centred approach throughout the patient’s entire journey as demonstrated by future joint projects and initiatives

• patient organizations being able to access a wide and secure EU funding base, including adequate and ongoing core institutional funding to fulfill their role in participatory democracy.


Opportunities for cooperation

• EPF Internal Mailing to patient group allies• Cooperation on key campaigns affecting all

patients and health stakeholders• Participation at respective meetings EPF

Spring Conference 2008• Contribution to projects ( e.g the tuning project


More information?

• www.eu-patient.eu• [email protected]

http://www.eu-patient.eu/

mailto:[email protected]

A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE

A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE

Documents

patients rightsfep meeting

epffep meeting

patientsfep meeting

patient centred

eu levelfep meeting

patient centred health

patient first26

patient researchers