Practical Steps to Lobbying - European Health Forum Gastein

Report
The Role of Patients
in EU Policy Development
European Health Forum Gastein
October 2003 – Bad Gastein
Presented by Erick Savoye
Director of the European Men’s Health Forum
European Patient Advocacy
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Background
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People increasingly demanding and using information
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Consumers of health care more empowered and proactive
Rapidly developing EU level coordination
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Patient advocacy, ‘flavour of the year’
Umbrella groups mostly organised by medical
condition/therapeutic areas
General campaigning topics:
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Increased EU recognition of patient needs
e.g. improved health information to patient, access to innovations in medicines
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Strengthening the role of patients in the decision-making
process
European Health Forum Gastein, Oct 2003 - Page 2
An Active Movement
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Consulting with the Commission:
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2001 – EU Health Forum
G10 High Level Group (Patient Mobility, Innovation and
Provision of medicines)
Lobbying in Parliament
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Lobbying activities of larger Cancer, AIDS/HIV groups
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Economic burden: a key message for other groups
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Ageing, the next big issue
Growing importance of the role of patient groups
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Community expands with enlargement
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Moving boundary for areas of national competence
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Launch of the EPF
European Health Forum Gastein, Oct 2003 - Page 3
The European Patients Forum
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From July 2001…
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Limited patient representation within the G10
Revision of EU legislation affecting
Direct To Consumer Information
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The absence of a patient umbrella organisation
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Encouragement and support from the Commission
… to creation in Jan 2003
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The feat of patient groups
One body to address and be consulted on issues regarding
the interest of patients
A strong voice for patients, independent of that of consumers
European Health Forum Gastein, Oct 2003 - Page 4
The European Patients Forum
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Objectives
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To facilitate a forum for all pan-European patient
organisations
To share information in order to strengthen the role of
European patients
To offer the views of patients by means of a representative
and independent resource
To provide a forum for patient groups to develop common
positions on EU health policy issues and lobby on their behalf
To become a point of reference for European Institutions on
patient-related issues
To co-operate on projects aimed at improving the health
outcomes and quality of life of European patients
European Health Forum Gastein, Oct 2003 - Page 5
The European Patients Forum
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Criteria for membership
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Legitimacy
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Representation
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Democracy
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Accountability and consultation
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Transparency
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Full and associate members
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Council of members
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Executive Committee
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Elected members
European Health Forum Gastein, Oct 2003 - Page 6
The European Men’s Health Forum
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A member of the European Patients Forum
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Witnessed the birth of the EU Health Forum
and the European Patients Forum
Pan-European advocacy organisation
that spans many therapeutic areas
Works to improve health outcomes
for men in Europe
Promotes collaboration with EU level
stakeholders to include men’s health
issues in the EU health policy and
research agenda.
Recently published report
More information: www.emhf.org
European Health Forum Gastein, Oct 2003 - Page 7
The European Patients Forum
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How are decisions taken and priorities set?
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Council
 Approval budget and accounts
 Policy positions
 Membership approval/dismissal
 Election Executive Committee
Executive Committee
 Agenda/priorities
 Administration
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No funding
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More information: www.europeanpatientsforum.org
European Health Forum Gastein, Oct 2003 - Page 8
The Paradox of the Funding Issue
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Some MEPs concerned about industry’s financial
support for patient advocates
Pan-European patient groups have clearly
demonstrated the value of their contribution…
… they are denied public health support
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Limited ability for small NGOs to auto finance
Unlike their national counterparts or Pan-European consumer
groups, they cannot receive core funding from public health
sources
Recommendations of the G10 Medicines Report
European Health Forum Gastein, Oct 2003 - Page 9
The G10 Report
7 May 2002
Funding of Patient Groups
‘Patient groups have an important contribution to make to the
development of health and medicines policy by articulating the needs
and views of patients, scrutinizing new policy proposals and calling
policy makers to account. Concern has been expressed, however
about the reliance of small NGOs on external funding, and their, need
from time to time, to have recourse to industry funding’
Recommendation 13:
’that the Commission consider providing core funding for European
patient groups to enable them to participate independently in the
debate and decision-making on health matters in the EU’
European Health Forum Gastein, Oct 2003 - Page 10
Commission Communication
‘A stronger European-based pharmaceutical industry
for the benefit of the patient’
1 July 2003
‘To make available, under the new Public Health programme, funding
for the patient and other public health organisations for networking
activities at an EU level and projects on patient information …’
EPF views
‘The European Patients Forum welcomes the clear focus of the
Commission…’ and ’… urges European Institutions to ensure core
funding for representative pan-European patient organisations…’
EPF press release Aug 2003
European Health Forum Gastein, Oct 2003 - Page 11
G10: a real opportunity for patients?
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The Commission’s support for EPF has now stopped
Uncertainty of the Parliament’s vote over budget line
proposal for 2004
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EP decision likely to affect the future of the EPF
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What about other Pan-European patient groups?
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In the meantime, no support and a lot of effort from
pan-European patient groups has gone into a long
battle, the outcome of which still remains uncertain.
European Health Forum Gastein, Oct 2003 - Page 12

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