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THE ADDED VALUE OF PATIENT ORGANISATIONS
14/02/18
Nihil novi nisi commune consensus - Warsaw
@eupatientsforum
Michał Rataj
Board Member, European Patients’ Forum
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• European Patients’ Forum – Umbrella organisation
– Active since 2003
– Independent & non-governmental
– EU patients’ voice
• Our members – 74 patients’ groups
– Disease-specific EU & national coalitions
About EPF
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• Title What can Patient organisations
do?
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European Commission
Public consultations
EU umbrella patients’ org
National patients’
organisations
European Parliament
Council
Health Ministers
approve/rejectDraft Directive
National law in all Member States
Final Directive
Draft Directive
Draft
Directive changed
Patient organisations in the EU legislative process
Transition period
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Complementary levels of action!
European POs National Alliances
• Closer to national decision-makers (including Council of the EU)
• Have a greater influence on MEPs from their country (they are voters!)
• Know about national-specific
situations, realities • Know about national legislation
• Closer to patients
• Closer to European decision-makers (better access to the European Commission, European Parliament’s Committees)
• In a better place to monitor the legislation at EU level
• Have a better “overview”, able
to compare situations and transfer best practices whenever possible
Knowledge
Influence
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ADDED VALUE OF PATIENT ORGANISATIONS: EXAMPLE OF THE
EUROPEAN MEDICINES AGENCY
With thanks to the PCWP Secretariat for their kind permission to use EMA materials
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Patient involvement in the lifecycle at EMA
Patients involved in every aspect of regulatory lifecycle of medicines, from pre-submission and evaluation through to post-authorisation
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The Patients and Consumers Working Party (PCWP)
8
• Platform for dialogue and exchange between the EMA and patient organisations
• Representation from 20 organisations, EMA committees & Management Board
• Four plenary meetings per year, and consulted as and when needed
2016:
10th Anniversary!
The PCWP: vital platform for dialogue
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CONCLUSION & FOOD FOR THOUGHT
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• EU legislation is demonstrably more patient-centred, thanks in part to our advocacy work over years (e.g. pharmacovigilance, cross-border healthcare directive)
• Soft law and policy: a clearer, more nuanced patient perspective (e.g. patient safety recommendations)
• Real evidence for change thanks to our investment in solid project work
Why do strong patient organisations matter?
EPF’ experience shows:
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A challenge for decision-makers
Patient empowerment and involvement: a “sine qua non” quality criterion for healthcare
There are now “seats at the table” – is the patient voice really heard?
How can you encourage “meaningful” patient involvement as opposed to tokenism?
Is the need for capacity-building for those involving patients sufficiently recognised ?
1
2
Individual patient experts
should be treated like
other experts
3
4
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More information www.eu-patient.eu [email protected]
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