PATIENT INVOLVEMENT, NOW - gatportugal.org · PATIENT INVOLVEMENT, NOW. #PatientsprescribE....
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18 October 2016 Lisbon, Portugal Camille Bullot, EPF Membership & Stakeholder Relations Manager PATIENT INVOLVEMENT, NOW #PatientsprescribE @eupatientsforum @hello_camille
Transcript of PATIENT INVOLVEMENT, NOW - gatportugal.org · PATIENT INVOLVEMENT, NOW. #PatientsprescribE....
18 October 2016
Lisbon, Portugal
Camille Bullot, EPF Membership & Stakeholder Relations Manager
PATIENT INVOLVEMENT, NOW
#PatientsprescribE@eupatientsforum
@hello_camille
EPF members
EPF members are pan-European disease-specific umbrellas or national platforms of patient organisations.
Our Vision!“All patients in the EU have equitable access to high quality, patient-centred health and social care.”
Why do we needpatient involvement?
Why Patient Involvement?
It is a right!1
2 It brings benefits!
3 In policy, a necessity to achieve balanced policies between stakeholders’ views
“The people have the right and duty to participate individually and collectively in the planning and implementation of their
healthcare.”
Alma Ata Declaration – Principle IV (1978, WHO)
Examples of patient involvement
European Commission
Public consultations
European Parliament Council
Health Ministers
approve/rejectDraft Directive
National laws in all Member States
EU umbrella patients’ org
National patients’
organisations
Final Directive
Draft Directive
Draft Directive changed
Influencing the EU legislative process
Transposition / implementation
1 - Direct Patient Reporting: Possibility for patients to report directly suspected adverse drug reactions to competent authorities
2 - Better information on pharmacovigilance to the public through the creation of national websites
3 - More effective collecting of medicines safety and adverse reactions information thanks to the development of a European database
Example 1: Pharmacovigilance
Directive and regulation adopted in 2010 –What benefits for patients?
• EU legislation is demonstrably more patient-centred, thanks in part to our advocacy work
• Soft law and policy: a clearer, more nuanced patient perspective
• Real evidence for change (thanks to our investment in solid project work)
Our Achievements as EPF
Why do strong European patient groups matter?
EPF Campaign on Patient Empowerment
→ Os Doentes prescrevem E5 para sistemas de saúde sustentáveis
Patients prescribe E5 for Better Health Systems!
• Educação (Education)
• Experiência (expertise)
• Entre iguais (Equality)
• Experiência coletiva (Experience)
• Envolvimento (Engagement)
Challenges and Conclusions
Challenges & food for thought
Patient empowerment and involvement: a “sine qua non” quality criterion for healthcare
There are now seats at the table, are there enough patients to fill them?
How can we encourage “meaningful” patient involvement as opposed to tokenism?
1
2
Individual patients experts
should be treated like
other experts
Patient Experience ≠
patient satisfaction
surveys
Everyone hasbiases!
3
• Recognizing the added-value of patient organisations– Work with them as equal partners
• Capacity-building for patient organisations– Driven by patient organisations themselves– With support from external stakeholders
• Promoting an enabling environment – through legislation and consultations
The way forward
What can YOU do to support the patient movement
/europeanpatientsforum
/eupatientsforum
More [email protected]
THANK YOU FOR YOUR ATTENTION!
Follow us on Social Media!
/eupatient
eu-patient.eu/blog
@hello_camille
