Transcript Document

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
My presentation
• Background to EPF
• Patient-centred Healthcare in Europe
• Moving Forward Together :
Empowerment, Information and
Sustainability
• Future partnership opportunities
between FEPI and EPF
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Image of Patients
A major move from
passive recipients, or
sanctimonious
bystanders,
……to
Informed and politicised
actors
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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.
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5 strategic goals
1.
2.
3.
4.
EQUAL ACCESS FOR PATIENTS
PATIENT INVOLVEMENT
PATIENTS’PERSPECTIVE
SUSTAINABLE PATIENT
ORGANISATIONS
5. PATIENT SOLIDARITY
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A virtuous circle of influence
Information
Consultation
Implementation and
review
Dialogue
Revision
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Patient Involvement at EU level
• Health related projects
and programmes
• Health agencies and
think tanks
• Cooperation with health
NGOs and other patient
organisations
• Cooperation with
industry
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Patient Involvement in Practice at EU level
• Pharmaceutical Forum
• Transparency Initiative
• Stakeholder
Involvement (Health
Democracy)
• Patient Safety
• Patient Mobility
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Responsibilities of Patients Organisations
• To be democratic,
inclusive and
independent
• To defend the rights of
their patient
constituency
• To be professional and
transparent
• To build consensus
and Solidarity
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EPF SPRING CONFERENCE
• MOVING FORWARD TOGETHER
• Empowerment, Information, Sustainability
• Important action for EPF to take forward at EU
level in partnership with other stakeholders.
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EMPOWERMENT
Active support for the involvement
and 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
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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
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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’
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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.
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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
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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
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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.
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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
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ITP Working Group
• Member States and Stakeholders (
MEPs, Health Professionals, ‘Insurance
funds’, industry and the patients)
• Focus
Quality Principles
ITP Model on Diabetes
Access to information in certain
settings ( eg hospitals, pharmacies)
Tool Box
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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
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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
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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
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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.
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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
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More information?
• www.eu-patient.eu
• [email protected]
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A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE